"Love is the flower you've got to let grow."

John Lennon

25/06/07 : 11.00pm (US Eastern Time/New York) - 26/06/07 :4:00AM (BST)

Hi everyone, it been a long time since the site has been updated. Like usual, I can only apologise, there has not been enough time in the day because of the commitments I/we have had with the family, work, fundraising and arranging the trip to America.

In respect to the trip, well we're here (thank you ever so much). We travelled down to Luton Airport by taxi on Saturday then flew out early Sunday morning to New York. The flight was superb we had seats donated to us on behalf of "Media Planning Group" (www.mpg-uk.com) and the airline themselves - "Silverjet" (www.flysilverjet.com).

I want to say a big thank you to these two companies, one for their generosity and two because they did not want any publicity what-so-ever. When you take into account that in this day and age that some big businesses want something back, their unselfishness is a credit to themselves.

Now I want to say a further big thank you to Candice from "MPG", she has been terrific ever since she contacted us in the early days of Alex campiagn. When she sent us the email offering the flights I replied in total honestly and asked what's the catch, to which she replied, John there's no catch, ever since she's been thier for us, Sue has had numerous telephone conversations with her; and in sue own's words, she is one friendly, caring individual. I would like to meet her and her employer's one day to personally thank them for what they have done for us as a family. A similar thank you goes to all the staff in Silverjet (Luton and New York) . Each and everyone one of them is a credit to the company they work.

We're spending a couple of days in New York to allow Alex and ourselves to prepare for another 7 hour journey to Seattle (north west coast). It's here that we'll be attending the Little People of Amercia Convention. This year it is envisaged that over 5,000 people will be attending as it's the convention's 50th Birthday. We are going to meet some extraordinary individuals and families here.

More importantly were going to meet families and individuals affected with Primordial Dwarfism! This is something that both Sue and myself have been wishing for. These are the people who are going to enlighten us more than anyone else. We have spoken to some of them via email and telephone but meeting them in person is going to be different and special. There's going to be over 20 families attending. Some of these families are going to be like ourselves, just getting to understand the issues that our children will have to overcome, some of them are veterans and experts that have been their, done it and bought the t-shirt, not once but twice.

It's these families that are going to educate us, more so than the medical teams. It's these families that in my eyes will be my role models. Some of their children are now young adults. Where us so called new families are finding it difficult in this age and day, these families were having to cope over 10-20 years ago and without any medical knowledge what-so-ever!!. I'm am in total awe of these mothers, dads, brothers and sisters in the way they have brought their children up and survived as families. I only say the latter because in the short two years of Alex's life so far have been the most difficult that I and Sue have encountered in both of our lives.

Additionally whislt we are in the convention, we are going to meet the medical team that will be carrying out all the neccessary tests on Alex in Delaware. The initial plan was for us to go back to America in September but the specialist in Delaware have free days the latter end of the following week after the convention. Therefore were going to get everything done in one trip, both Sue and myself are really glad about as we will not have to wait any longer and barring any bad news we can close another chapter of Alex's life and concentrate on the following 6 - 12 months.

In the four days after the conference we are going to treat Mike and Jess to a trip to Disney World, we're paying for this from our own money. It's something we want to do for them, for the last 2 years they have had to play second fiddle to Alex and they have not complained one bit. Even to this present day they somewhat get overlooked a lot - but again do they complain - not in the slightest.

So Mike and Jess when you get to read this tomorrow, we want to just say thank you and we love you two so so much; and Alex could not have a better brother and sister.

Over the next 3 weeks i will get this site totally updated, I will also be sending some Video blogs to our local newspaper via Seattle, tried today but the Hotel internet connection is not playing ball, because of the size of the files. I will also post some comments about the days we have spent in New York.

One thing I want to do is say a big big thank you to two special people. They are Stephen and Nancy Hall. Tomorrow I will tell you more about these two very special people once I get a permission from them (going to mention them anyway even if don't get their permission :o) by the time they read it we'll be on our way to Seattle.

Bye for now

John (Alex's Dad)

21/07/07 :3.30am (BST)

Hi everyone

Famous last words, i apologise for not updating this sooner, we had problems with the internet and could not upload anything after the first night and to be totally honest once the journey started to kick in we were too busy and tired, I apogise for this!

We have been back since last Sunday, but we have been totally since we came back, plus the Jetlag has not helped also.

What I have done is give a full summary of our three week journey below - hope you enjoy it, to many of the people who visit the site, your a part of what happened below and we cannot and will not be able to thank you enough!

On arriving in New York, the first thing we noticed when we stepped of the plane was the heat, the temperature was in the 90's but the humidity was in the 60's, the right settings to cook a pan of scouse and it felt like we were the ingredients.

The journey to the hotel (Kimberly Hotel in Manhattan) was an eye opener and right away you realise how big New York is. Now it was mine, Sue's, Mike and Jess's time to feel small, this truly was the land of the giants. The New York Skyscrapers and some of the smaller buildings make our high rise buildings look like a two up, two down,or in some cases like bungalows.

You read books about New York, see articles in papers and magazines and see it on T.V and you get the idea how big it is but believe me it's bigger than you think, the buildings are colossal (and this was only in Manhattan).

Another thing that blows you away is the amount of traffic (especially yellow cabs) and the thousand of people milling about. If our government is complaining about congestion in city centres, then they should visit New York. They seem to have it big time, but their infrastructure seems to cope without tooooo many problems and there was no rubbish anywhere, things didn't add up?????

Anyway after we arrived in our hotel we briefly unpacked, showered and changed, then we met up with two special people, Stephen and Nancy Hall who took us out for tea or was it lunch, then again it may have been breakfast, our body clocks where all over the place. Stephen is originally from Liverpool but has spent the last 10 years living there, whilst Nancy is a born and bred New Yorker.

Over the next two days Stephen was to become our official tour guide and more so a our excellent host; and a alongside his beautiful wife Nancy, two kind hearted and generous friends.

After the meal Jess, Alex and myself went back to the hotel for some much needed sleep. Sue and Mike went for a evening stroll (more like a hike - ha ha) to Central Park accompanied by Stephen and Nancy. During the night, both Sue and I was woken several times by the most loudest and sometimes scary thunder and lightening. This seem to be the norm at night times in New York but the lightening strikes were impressive and I found myself watching it for a half an hour before my body told me to get back to sleep.

The next day Stephen had arranged for us to go on a bus tour of the city, we set off early around 10.30am (it was early to us as the jet lag had really kicked in) with a 10 minute walk that took us past the beautiful and very imposing Gothic St. Patrick's Cathedral, a similar imposing Grand Central Terminal, which made Lime Street look like Sandhills, and the Rockefeller Centre.

After the short walk, we lined up in a queue of a couple of hundred people all waiting to catch the next tour bus, after a couple of minutes we were drenched in sweat and then our bus arrived, in fact the buses were arriving every 5 minutes but it seemed like an eternity, then we settled in our seats for open top bus tour, this took us by all the main features of the city, Times Square, Broadway, Greenwich Village, little Italy, SoHo, and Wall Street—the financial district. We passed by some of the world's most recognizable buildings and some of the world's most celebrated architecture, such as City Hall, Chrysler Building, Citigroup Centre, Lipstick Building, Woolworth Building and Empire State Building and many others.

At one point of the journey I nearly lost my head or should I say eyesight. There's not much trees in New York, well I didn't see many until at one point of the journey, I saw one close up. As we were going to Greenwich Village, out tour guide warned us to keep an eye out for trees and their low lying branches, as we were coming down a proper avenue, i.e. a street lined with trees.

I didn't hear him as I was talking to and facing Sue, but she had her wits about here, when suddenly out of nowhere she shouted duck, I turned and ducked just in time as I we went through what I would call a forest, which was really a load of branches. I turned back to face Sue, bragging about how I had reflexes of a cat and as I turned to face the front again, the biggest leafiest branches in the world hit me square in the face. what made it worse was the speed of the bus. It seemed so fast but the effect of the branches making a meal out of my face seemed everlasting. Believe me the pain was excruciating but I got off lightly with a small swollen lip, a couple of scratches and a bloodshot eye, which does help when you wear contact lens.

After 2 hours on the bus, we got off near the river right next to the Brooklyn Bridge, which is a site to see and something which New Yorker are more proud of then anything else in their city, we then had something to eat and then went on the Statten Island ferry, so we got to see the Statue of Liberty not up close but close enough. That was a surprise as it wasn’t as big as I assumed but it was still an imposing sight to see. We didn't or should I say could not go to see the statute up closer because it would have meant us queuing for hours and in this heat we had to protect Alex, just in case he dehydrated.

We also got to see New York from another perspective, from the river, it was impressive, it reminded me of home, especially as a young boy. There was many a time when we would go to New Brighton at weekends and after spending the day on the beach and fair, you always looked forward to the ferry home; and there was nothing better than seeing our skyline come closer. This was similar and already I was feeling homesick.

After the ferry, we walked up to Ground Zero, at first it was disappointing as the area was surrounded by construction fencing and a lot of building work (excavation) was taking place. But it soon dawned on you the size of the building site and when you look around the area you realised again the area was surrounded with gigantic buildings, some of them skyscrapers, then you realised further how tall the two towers were. It 's quite saddening that so many people lost their lives that day but if those planes had hit a couple of hours later then the devastation would had been ten-fold or more.

Another thing that impressed us was the friendliness of the people we met, wow do they know how to welcome you and when they noticed Alex they really wanted to know about Alex and marvelled at him, one even equipped that he was truly in the city of giants, which I couldn’t argue with. True New Yorkers are not so different from Scousers they have pride in their city and they welcome you with open hands and hearts.

After this we took the underground back to our apartment, this was surreal as both Mike and myself kept talking about one of our favourite movies', "The Warriors" we kept saying would it be funny if the Baseball Furies or the Turnbull Ac's appeared there or hope the Riffs don't show, anyway by the time we got home, it was 8pm, so we had a light evening meal and all went to bed, me nursing a headache, sore eye and my pride!.

The next day started at 10am, it was our last full day, after yesterdays excursions we wanted something more relaxing, the temperature was in the high 90's and we all was suffering and no sooner than we steeped outside we were having another shower in our own sweat. Stephen must have noticed this, especially after yesterday, so he planned a tripped to the Empire state Building, he got us fast track tickets so we didn't have to queue for hours, once we got there, we were at the top within 10 minutes.

The views were spectacular even though it was hazy, you realised again how big the city was. The Building was in located in Manhattan which is a island (13.4 miles long and 2.3 miles wide at its widest) but then you realised this is only one part of New York. New York City has five boroughs—the Bronx, Brooklyn, Manhattan, Queens and Staten Island—that are linked by a series of bridges, tunnels and ferries. The Bronx is north of Manhattan and the only borough attached to the mainland; Queens and Brooklyn are on the western tip of Long Island, which stretches east into the Atlantic Ocean.

After the Empire State Building we went to Times Square and visited some shops, Stephen wanted Mike and Jess to visit Toys R Us and when we got there we realised why, it had a blooming big Ferris wheel inside, this was no joke, my jaw hit the floor and I stood there like a Charlie out of "Charlie and the Chocolate Factory, when he realised he had the last ticket.

Another attraction that caught my eye and made me laugh so hard was, a man dressed in nothing but a white Stetson, a white pair of underpants, cowboy boots and playing country and western music on a guitar in the middle of traffic. He's known as "The Naked Cowboy". The crowds loved him. I imagined myself doing the same thing in Queens Square, but don't think I would be that popular!

After Times Square, we went back to Stephen and Nancy's neighbourhood, had a meal and chat in a pub that would not look out of place down Scotland Road, friendly, authentic and full of community spirit, then went back to their house, to rest, chat and say our goodbyes. In such a short space of time we had met new friends, been shown one one the most spectacular city's in the world and it dawned on us this journey of ours was only begging, especially as both Sue and I realised our next destination would bring us face to face with parents like ourselves and children/adults like Alex. We were excited, scared and could not wait never mind sleep!

Seattle (27/06/07 - 03/07/07)

We got to JKF airport in New York at 1pm, expecting to be on a plane for 3pm but the departure time said the plane was 2 hours late because of a storm on route, we could handle that as the airport was air conditioned. The plane came in as expected 2 hours late at 5pm, we boarded and then were told that the runway was closed because the storm had reached the city and the lightening strikes were a health and safety risk to the airport ground workers.

This made me laugh as we sat on that plane for four hours, stuck on a runway in the middle of JFK and they were scared for the workers??? The plane eventually left JFK 7 hours late and we had another 7 hour flight, the crew on the flight was good but memories of Silverjet came rushing back.

Got to admit, Alex during all this travelling behaved impeccable and loved every minute of this. He just loved looking at things and meeting people. Even on landing at Seattle we did a double landing, many people jumped, a couple of people gave a scream but as Alex sat on my lap, he started laughing, clapped his hands and did sign language for the word "More", myself I gave the look for the words "Toilet Now". This must have reminded him of being in the car back home, when driving, we go over so many bumps on the roads and he loves it!!!

We eventually arrived in Seattle, 14 hours after we set off, now our body clocks were going crazy, as we had entered another time zone which was 3 hours behind New York, which was 5 hours behind the UK, so in total we were 8 hours behind. An half hour later we was in our hotel (The Hilton) and as you can expect the first thing we did was unpack our bed clothes and went straight to bed, and sleep we did, 10 hours in all, even Alex. Before we knew it we had technically lost one full day.

During the first full day in Seattle (29/07/07), we sat by the pool in the morning, the weather was fine, it's in the high 80'S not too hot but hot enough to jump in the pool every 20 minutes to cool down, we spent a couple of hours just chilling by the pool.

In the afternoon we took Mike to the Jimi Hendrix Memorial and visited his Grave. Hendrix is one of Mike's Heroes, this surprised our taxi driver as he grew up listening to Hendrix when he was alive in the late 60's and he could not understand why a 12 year old boy was in awe of Hendrix.

One thing that spooked us out, was as we were driving to the cemetery, the weather was great, as we got out of the car and walk over to the memorial, the weather was fine, as we approached the memorial and started taking pictures, a torrential downpour appeared from nowhere, this made us run back to the taxi, as we got in the taxi, the rain stopped.

I'm not superstitious but we all spoke about this all the way back to the Hotel. Did we walk across Hendix;s grave and was he telling us to get lost?

We did not do much for the rest of the day/night and just sat in our hotel room just chilling out, Mike and Jess playing games on their PSP and DS consoles, whilst Sue and I entertained Alex and watched TV before having an early night as tomorrow was going to be busy and some of the other Primordial families would be there.

The next day came and we were excited, we had to go to the Double Tree hotel as this was where the Little People Of America convention was being held and we also needed to register our arrival/attendance. It was a 5 minute walk and as we approach the Hotel entrance we saw masses of families, some normal stature with one member of the family being short stature and many entire short stature families, some having two or three generations with them.

The buzz inside the hotel was electric and all you could sense was this was going to be a fun filled time for everyone one of them, party mood had hit Seattle.

As we approach the registration desk we could feel many people stare at us and the comment "here's one of the little people" could be heard from many an onlooker. It took a couple of minutes to register because of the excitement we were feeling. It eventually sank home that it was Alex they where talking about and more so when a couple of families and individual small stature people came up to us to introduce themselves and then wanted to hold and talk to Alex.

Well at that point we felt at home and just mingled and introduced ourselves to anyone who was at hand. An hour or so later, we literally bumped in to our first Primordial Family, Stephen & Bette Wilson and their daughter Davina aged 27, they were from Newport Washington/Seattle. This was a dream come through for us and we spent the next 30 minutes exchanging stories and admiring each others child. I think reality kicked in for us as Davina was about the same size as Alex (2ft 4in) and she was 25 years older than Alex but we didn't care, she was perfect, beautiful and I had fallen in love with her.

We parted company and said our goodbyes and promised that we would catch up with each other tomorrow during one of two Primordial Family meetings that was put on for us and our children. We milled about the hotel for the next hour or so, meeting and speaking to families and individuals from all over America, by this time there must have been over 200 people within the hotel lobby and we decided to go back to the hotel and chill by the pool for the rest of the day.

During the evening we had another appointment, we met up with one of the Primordial family's' that we had befriended. We had waited so long for this meeting as we'd been emailing and phoning each other for the last couple of months.

The family were the white's Marv and Nic and their son Tyler. It was a pleasure meeting this family and we were to become closer everyday. Marv and Nic was born in the UK but moved there when she was 18; you can find more about them on their son's website (www.ourlittlemiracle.info).

Their son Tyler aged 4 became attached to us and he's one energetic little individual who had me racing him for hours on end and in the end I won most of the races and the ones he won, I let him because I felt sorry for him, that's my excuse anyway!

The next day (31/0707) we went to the Double Tree Hotel again as we knew more Primordial Families would be there and we wasn't wrong, there where five more, Jackie and Larry Kritzeck and their daughter, Hanna (aged 12), Kristy Jordan and her daughter and son, Bridget (aged 18) and Bradley (aged 16), Shelly Smith and her son, Nicholas (aged 15), Jennifer Marcello and her daughter, Taylor (aged 14) and finally Brianne Jourdin and her daughter, Kenadie (aged 4).

We spent the best part of the day swimming in the pool along all the PD families (Nic, Mar and Tyler included) along with with 50 or more small stature families and what an experience it was for the Connerty household.

One of the many highlights I experienced was sitting in a hot spa with most of the PD children along with 50 or more other small stature people, who were a little bit more boisterous than the PD children, every one of them was jumping around and splashing doing no harm but then little Brad shouted above everyone else in a high pitched voice "Come on people give us some space", everyone more or less stopped and then it was like the parting of the Red Sea!

That made my day and from that point one, my worries for Alex for the future definitely went away!

After we had our tea, we met up with Marv, Nic and Tyler for a couple of hours and then we had another meeting. This time it was with a TV Documentary Team who would be following us around for the next couple of days in Seattle and for most of the time in Delaware when Alex has tests done on him. They have been following us about for the last couple of month (on and off).

I will not say to much about the Documentary as it's going to be aired in very near future, just keep visiting the website, it will be updated regularly (I promise).

The following morning (01/07/07), we've arranged to meet another very special person and her daughters, so after an early rise and we set off to the Double Tree Hotel to meet Elizabeth Hale and her daughter's Faith (aged 8) and Chloe (aged 4), Chloe has MOPDII.

Elizabeth Hale is one incredible kind-hearted woman, she has utilised all her time and energy to set up a website (www.potentialsfoundation.org) . She has brought all the PD families under one roof with the website and has dedicated her life recently to promote PD in America and raise funds to help the families to get to the LPA in Seattle.

The meeting goes well and finally we get to meet face to face, during this time we speak about each other families and for us to thank her personally for what she has done. At the same time Jess and Faith start building a friendship, which is developing as we speak and well Alex's to young to realise that Chloe is one of the most beautiful girls in the world. When all the PD boys under 6 get older there going to start fighting over Chloe and all I can say is whoever gets her is going to be one lucky man!!

Oh by the way we forgot to mention poor Mike, well he's left in the corner of the room for the next hour and a half and loving every moment of it. During our chat, we also speak about setting up a similar foundation in the UK because since Alex's story was published, we have been in touch with 5 families here in the UK (2 have been diagnosed in the last 3 months and 3 are undiagnosed at the present).

Elizabeth and Sue and myself have the same thoughts about what we want the future to hold for PD children and their children and how at one point in our lives we both felt alone, she gives us her consent and blessing to use the foundations name and aims as blue print for a UK based foundation. This is excellent news but before we know it, time runs out and we have to depart as we have another appointment in downtown Seattle.

Our next appointment is something Mike and myself are really looking forward to. We haves arranged for us to attend a baseball game, Seattle Mariners versus Toronto Bluejays, During the next two hours Mike and myself have been converted and are now baseball fans!

Unfortunately the excitement is short lived as Sue and Jess are a little bored, no totally bored and want to leave on the basis that the heat is to much (spoilsports). They are correct, it was like a microwave oven in the open air stadium and the officials move us twice to shelter but the sun seemed to follow us! Plus if we had stayed Sue would have throttled us as the game lasted another two hours.

I hate to say this, but baseball is more exciting then cricket and the atmosphere was electric and family friendly. If we ever get to America again, baseball will be on the agenda, with or without Sue and Jess - hope she doesn't read this - as she respond with a "Oh Yeah" and make my life hell - just glad we never brought a bat home with us (we did get mitts and a ball each - yippee!)

Anyway, both Mike and I leave the stadium reluctantly and visit the shopping area near the waterfront, Sue bought an American phone as both mine and hers don't work, we haven't had any luck with the Telecommunications in the USA but we did get a super deal on the phone, $50 for the phone with $60 worth of credit on.

After this we go for a walk with the idea going up the Space Needle but when we get there the queues was huge and we did not want to wait as we were hungry and tired. We found an Italian restaurant, filled our faces and went back to the hotel, we met up with Mar, Nic and Tyler and had a laugh as all the kids played after an hour of so we said goodnight and went to our rooms and we all immediately fell asleep.

The next day is a busy one, first thing in the morning I took Alex to the Double Tree as there's a couple of stalls set up displaying information and goods about Dwarfism, whilst Sue, Mike and Jess spend sometime in the pool at our hotel.

In the Doubletree we get to meet some of the families again and then we look around the stalls. One of them catches my eye, it's a stall advertising and selling motor bikes and quads. Not ordinary motor bikes and quads but ones that have been custom built for small stature people. Even more impressive, it's owned by a small stature person who came up with the idea. I got speaking to the man and he explained how it came about, which was inspirational, most of his life he was confined to a wheelchair, but after numerous operations he learnt to walk. After gaining confidence in walking, he wanted to do what most people do, drive a car, but this was out of the question at the time because no one had developed a way of adapting a car and financially it was out of the question for him to do it himself, so he then went for the next best thing - motor bikes.

They had already been motor-bikes developed on a small scale but not road ready, so he got in touch with a manufacturer and explained his dream and together they developed a road bike for him and before long he set up a business. This story left me very emotional and it was another reason why I felt Alex's future would not bleak. When you look at it, disabled people make us so called abled bodied people look pathetic, we moan about such trivial things and these people have to adapt to life on top of all the problems daily life throws at us.

Sometimes I'm ashamed to be human and this was one of those times. Standing in front of me was a man no taller than above my knee and I felt very small and humbled next to him. So much wrong goes on in this world, I wish that the world politicians were standing next to me during that time, they might have learnt something that day. To be honest they would have but the problem is they would have forgotten about it the next day!

After my little browse, I met up with Sue and Alex, as were due to meet the doctors for a introduction and pre-assessment of Alex, this was an exciting time for us and one that we dreamt of for a long time. Our own doctors have been the best but silently it;s been very frustrating because none of them could discuss things in a Primordial context.

But here in front of us, we were speaking to the people who understood our concerns for our child and us as parents! They gave us an insight into the medical side of PD, answered the majority of our questions! After a couple of hours we felt that we understood what was wrong with Alex, they told us what we need to do and what they were going to do in Delaware next week.

I'll leave it there for now and will enlighten you later on when I describe the journey to Delaware.

Right after the meeting with the Doctors we rushed over to the next hotel (Red Lion) as a meeting had been arranged for all the Primordial Families which was set up by Elizabeth Hale. So we headed back and what a way to end the day, for the next 3 hours we came face to face with the biggest gathering of PD families ever.

There was 24 PD children and adults in total and that day I witnessed something short of a miracle, that's has thrilled me so much even to this day. I got to see and meet 24 titans like Alex, the youngest being just 6 months old and the oldest being 27. I wish you all could have been, it was a sight to see and to see them in all their glory without a care in the world, without the feeling that they are different and all getting on with each other - united - all friends!

That day I saw my son play and interact with children and adults like never before. It’s something I’m going to treasure for a long time to come. Additionally, for the first time ever I have not had to worry about average size children being to rough with him (hope you all know what I mean). I didn't even have to worry about him being left out!

I also got to meet wonderful and inspirational parents. The stories we told each other were similar but different at the same time, misdiagnosis, no diagnosis, eating problems, worry of being alone, aneurysms, infections, operations, their achievements to date and we all agreed that we are proud of each other and our children and would not change them for anything.

When we got back to the hotel room that night, it was hard to sleep, Sue and I kept talking in between packing and did not got to sleep until the earlier hours, Mike and Jess realised just how small Alex would be when he got to their aged and in a way it shocked them, not in a scared way but reality had kicked in about Alex's size.

Over the last 12 months we have tried educating Mike and Jess about Alex and the condition, a lot of it has stuck in, but it's been hard for them to visualise Alex when doing normal things, switching lights on, opening doors, reaching for things etc...

We have used everything from pieces of woods to cardboard cut-outs and put them up against Mike and Jess, put them up against doors, chairs and kitchen units but sometimes its hard to represent a living being with a static object.

Even the numerous documentaries that have been aired about PD have been watched dozens of times, You sense their sizes but again you do not get a true representation. Well today they learned ( we all learned, to be honest) by meeting these children and adults in person and seeing them walk, talk and breathe.

If nothing else came out of this trip, we would have been satisfied with just the outcome of this special meeting.

It was our last day and in the morning we had another similar meeting but in attendance was some of the Doctors that we had meet yesterday, it was a good opportunity for us to say thanks collectively and it gave us the opportunity of discussing PD in a general way (research, findings, way forward, etc..) and also allowed us to have a question and answer debate. It also gave us the opportunity to say our farewells as some of us where leaving including ourselves sadly.

For Sue and I this was a one part of our dream that had become a reality and we would not swap that dream/reality with anything and we can't wait to meet up again in the future!

Well before we knew it we where on a plane for a 5 hour flight to Orlando to see M I C - KEY - MOU - SE and we were all was excited accept Alex. He was more excited about getting on the plane and when he did, he kept jumping up and down in way we knew he was wanting it to go Bumpty Bumpty Bumpty Bump, I looked at him gave him a look that said your a bad omen son and he just grinned at me!

I ensured that my seat belt was kept on all the way and tightening it for safe measure! Anyway for the first hour I enjoyed his little joke and entertained him and before we both knew it, dad and lad was asleep, the next thing I knew was Sue was waking me up and letting me know we about to land.

I look at Alex whose was also awake and just grimaced! Anyway Alex was disappointed as the landing was soft and gentle and I gave him another look that said Bumpty Bumpty Bumpty my Butt!

As we stepped out of the plane, my worse fear hit me straight away, HEAT. Blimey it was hot and I looked at Sue and frowned! I like hot weather can even handle the temperature in the 90's as long as there's a breeze but I don't think they've invented a breeze yet in the USA and to make the matters worse the humidity was stifling!

When we were waiting putting our cases into the Hotel courtesy bus I asked the driver what the temperature was, the reply was 96 degrees and the humidity was in the 60's and this was at 7pm. I felt sick just thinking about it and wanted to be back home - I kept saying to myself - There's No Place Like Home, There's No Place Like Home all the way to the Hotel. By the time we arrived at the Hotel, it was 8pm, we settled in our room, had a bite to eat, and went to bed, we had just lost 3 hours as we returned to the Eastern time zone, my body clock had given up hope, packed it own bags and went off on holiday.

The next morning we got up earlier, to visit our first Disney destination "Epcot", within 40 minutes we where there, it was 9:15am, we were all excited, but than it hit us - and it hit us badly, we where there with half of the USA population.

It was July the 4th, God it was murder and the weather was having fun! It was slowly Barbequing me and the rest of the family! For the next two hours Mike, Jess, Sue and I (we took turns as to mind Alex) stood in four queues for some of the main rides and all five us where drained. We tried getting fast track tickets and the tickets were telling us to come back between 7pm and 8pm, yeah right!

We went for some lunch in the Rose and Crown Pub based in the UK pavilion, (which we had to wait 45 minutes before getting called to our table) By the time we where seated we were all totally knackered, I even started hallucination and could see myself on the next table being served to a Japanese Tourist, I tell you no lie that I had a apple stuck in my mouth and was surround by steaming hot new potatoes, I was only brought out of my trance by Sue screaming at me for the 4th time to get the babies' buggy from the forecourt and get it undercover!

Without realising I said "Why"? Because it's raining cats and dogs you dosey lout! (the last two word have been used, just in case any young visitors are reading this!). I ran outside happily thinking the rain would cool me down and refresh my scrambled brain! WRONG, by the time I got the buggy under safe cover, I realised that steam was coming off my body, I tell you no lie, my body overheats very quickly and with the assistance of some boiling hot rain - I was literally cooking slowly, my mind cast back to my hallucination and inside I started to cry and weep!

It couldn't get worse could it? Well let me tell you and you decide!

The meal arrived and my mind started to drift to home cooking, in front of me was the biggest Minted Baby Lamb shank sitting on a bed of Creamy Mash Potatoes, with a serving of Carrots and Green Beans! Within the first mouthful, I was in total Heaven and ravished the rest without looking up or talking. For the first time today, I felt fine, I looked up and Sue, Mike Jess and Alex where all happy, their meals were as good as mine. After living on an American based diet for the best part of our journey this is what we needed! Home based cooking! By the way, prior to the meal, there was only four of us hating this hell we were in, Alex even though he looked flushed, loved every moment of the day ( and every day in America), he took everything in and loved the people (especially children) who stopped and remarked how beautiful he was and they loved him even more after finding out about him!

They see news articles and programmes weekly about Primordial Children, but they have not seen any in person. For everyone who stopped us, it was a pleasure for them, in all I think Alex had his picture took over a hundred times since landing in the USA.

Anyway back to the meal, after we devoured the main meal and deserts, we seemed a lot better and made our way out for our next port of call!. Within seconds of stepping outside I thought I was hallucinating again, around a corner, I could hear a live band, singing Beatle songs, I had to check this out and rallied the family to follow me, as we turned the corner, there they where, right in front of me stood, John, Paul, George and Ringo; live in persons, belting out their hits, the crowd loved them, so did we, we stood there for 30 minutes listening to them, it was good and the horrors from the morning drifted away, until the band stopped playing without further ado - why?

Because out of nowhere the loudest thunder and the brightest lightening appeared, followed instantly by a tropical rainstorm. Initially I cursed it, but I was not going to let it get to me and destroy the last 90 minutes piece of normality! I had a brainwave, I noticed a lot of the Americans wearing them so I decided we're going to wear them also, so I made the entire family run to the nearest gift shop and bought us all a pvc poncho, we got them and started to walk around in the downpour. Within minutes Sue was giving me that look and that said you great big stupid dosey lout!

I realised what she meant and why. Thinking I was going to save the day, the entire family started to feel liked Jacket Potatoes, that were slowly cooking in tinfoil! Even Alex gave me the stare, that said Dad I'm putting you up for adoption, why? I bought him one, as his buggy was soaked through and all I could think of was - I've just turned him into a Steamed New Baby Potato. Sue looked at me again and her stare had change again -It read as - John you going to find the DIVORCE papers waiting for you when you get back home.

Without further ado, I made an executive decision and our trip to Epcot was over - well Sue, Mike Jess and Alex had made the decision really as I found myself running after them as they made their way to the exit! The rest of the afternoon and night was spent in the Hotel room, Sue, Mike Jess and Alex playing games and watching TV, whilst I found myself in the Hotel Laundry doing 3 days worth of washing that had built up hoping that Sue would forgive me?

The next day found us at Magical Kingdom, the heat was unbearable but we beat it by spending most of the morning in the indoor kiddie attractions, mainly for Alex's Benefit - he loved every moment of it, we all did in fact, after lunch we done a couple of rides for Mike and Jess but by then the heat was killing us, the temperature had reached 98 degrees and the humidity was close behind. Mike and Jess made the decision this time, they pleaded with us to go back to the hotel, they made the right decision, so we went back to the hotel, spent some time by the pool and rest of the time in the room. It wasn't a bad idea really and for the remainder of the next 2 days in Orlando, we either stayed at the hotel or visited some malls. This allowed us to catch up on some much needed rest, sleep and let our bodies recover from the trips that we had made in the last 13 days.

When you think of it we had just stormed across a third of the way around the world (8,619 miles), passed through 3 times zones, by the time we get back home, we would have travelled in excess of 13500, miles by car, plane and foot. Not bad for 5 individuals, 1 pram and 5 suitcases.

In all our trip to Disney was a total washout and we could not wait to leave, Sue and I was upset for Mike and Jess, this was suppose to be a thank you trip for them after what they've been through over the last 2 years, but I'm afraid that we have mentally scarred them, as when we told them that we would take them next year they told us not to bother and started to shake. Enough said!!!!!!!!

The 2 hour flight out of Orlando To Philadelphia passed uneventful, before we knew it we where at our hotel for the last leg of our journey. It was 3pm so we decided to have an early tea as were due to meet a very special lady.

The lady in question was called Val, Val Rigby to be precise. Val works in the Oncology Department at the Nemours Alfred I Dupont Hospital. She got in touch with us via the Echo after her mother/father in-law, Maureen and Jim Rigby from Southport (originally from Liverpool) read our story. She wanted to help us when we got to Delaware and help she did.

Over the next 4 days she, became a very close friend along with her husband Paul, Son Alex, and daughter Sian; not forgetting Maureen and Jim who were over visiting them. During these four days they looked after Mike and Jess, took them swimming and bowling; took them to see the latest Harry Potter movie, let them sleep over and just cared for them whilst Sue, Alex and I attended the hospital.

They even cooked us a family meal on the second day which was delightful and for a couple of hours or more we were back home!

The next day (10/07/07) started at 9am, we had an appointment with Doctor Bober, Co-Director, Skeletal Dysplasia Program and Linda Nicholson a genetics' counsellor (who we had met in Seattle), these were the leading figures on Primordial Dwarfism and to our surprise and excitement Dr Charles Scott turned up, he was one of the foremost experts who is now semi retired, they assessed Alex and confirmed that he did in fact have MOPD II.

They measured him head to foot and explained that his head was the size of 6 week old baby and that he was the size of a 9 to 12 month old baby. His weight was average for an Primordial Child of his age, he was unique in that his fingers where slender and long, this is the first time this has been seen in PD children.

They expressed concerns that he was not walking properly, talking and eating and stressed that continuous work need to be done in encouraging him to do all these because of the risk of him not wanting to do them ever.

In respect to walking we explained that Alex for the last 12 months had been in a baby walker and had developed a style of walking on his toe's. They explained that it would be beneficial if we took this away as one they are banned in America because of the number of deaths and injuries that are caused by children falling/toppling over in them and it makes the children lazy.

This shocked us and made us feel guilty as we have always said that if Alex could not walk at least it got him around the house and more so it allows us to carry on with normal day to day duties. Sue had made her mind up right and decided that the walker was being ditched once we got home, I said I can understand what was explained but felt that this was Alex only bit of normal freedom and also explained that it allowed Sue some freedom around the house when I'm not there. If we did get rid of the walker then Sue would have to sit with Alex or carry him everywhere around the house because Alex get's frustrated of being sat down even for short periods.

This I felt would drive Sue mad. But knowing Sue she had already thrown the walker out in her mind!!

We explained that our Occupational Therapist was great and is doing a lot on his communications skills and things are going fine. We further explained that on the eating side, this has already been looked continuously but because of the risk of him aspirating in respect to him eating was great especially after all that he'd been through last year, and at the time it was something that could be done later and at the time were all in agreed with this. But we explained that we would discuss this with our specialist when we get home.

They took down his life story (Medical History and Development) and ours. This was to help set up a database to help with much needed research. They explained more in-depth about PD as a whole and explained that over the last 12 months they have more cases of PD than ever before and because of the this they are having to rethink all the previous information on PD.

We expressed our concerns about Aneurysm and Moyamoya and Dr Bober explained that children with MOPD II and possibly some with Seckel syndrome are at increased risk to develop cerebral aneurysms or moyamoya disease.

Although the exact risk of development of these complications is unknown, estimates have been as high as 25%. They recommend regular screening by magnetic resonance angiogram (MRA) be done. Thay als think MRA should be performed at diagnosis and at yearly intervals thereafter.

Dr Bober explained further that he thinks it is important to understand that while we know of an association or a risk for the development of cerebral vascular problems in MOPD II, we do not completely understand the natural history of or pathogenesis of these problems. Some children have been affected before the age of 4. It would be our hope that if these problems can be identified early, some type of treatment could be given to prevent complications.

Aneurysms are balloon-like dilations which occur often times at the bifurcation or splitting of a single blood vessel into two. This dilatation is a weak spot in the vessel wall and can rupture leading to a stroke. Treatment could include surgical clipping, or use of a catheter inserting a coil to cause the vessel to clot.

At present they are researching these issues further and some of the things there are interested in are:

Do we know of anyone whom has/d moya-moya which was NOT detected on the INITIAL MRA scan?

Do we know of anyone whom has/d an aneurysm which was NOT detected on the INITIAL MAR scan?

Do we know of anyone whom was using growth hormone AND later went on to have an aneurysm develop?

Do we know of anyone whom developed an aneurysm AND also had a high platelet count?
How many kids have been on growth hormone?
How many are known to have a high platelet count?

This information could be useful in helping determine the best way to approach the screening for vascular anomalies, when we've discussed this with other parents we where all elated that this was getting looked into in-depth. What we did agree is that if the risk of Aneurysms and Moya Moya was not real then why was this work being carried out! Anyway Dr Bober explained that MRI/MRA scan would take place on Thursday at 9am but we needed to be in the hospital for 7:30 but prior to this x-rays would be needed on his lungs, and the orthopaedic consultant we were seeing tomorrow wanted some done on his legs and upper body. Before we knew it, we where in the x-ray room and then out again!

It may not have seemed it but the day went by quickly we where in the hospital for 6 hours and like normal we where totally knackered. As we travelled back to the hotel we where glad that we came all this way and made the right decision to do so, in a couple of days we were to know what the future holds for us or more so for Alex. Once we got to the room I fell asleep with Alex whilst Sue waited for Mike and Jess to come back from Val's. Sue took Mike and Jess out for tea while I stayed in bed with Alex and slept right through until the next morning.

The next day (11/07/07) started at 10am, we got to the hospital on time and within 5 minutes of arriving we where in to see Dr Mackenzie an orthopaedic specialist dealing in Skeletal Dysplasia and again with Primordial Dwarfism, by the time we had reached him he had already reviewed the x-rays. The good news is that his hips were perfect, his legs were straight, his feet have problems (both are vlagul) but they are still flexible and there is a lot of movement in them, he said if the problem did not rectify itself then it could be operated on but would not until he was a little older (2 more years).

One thing he did tell us was his current braces/splints were to heavy for him especially with his shoes on and the restricting his movement. He explained further that he had tremendous strength in his legs and his muscle tone was good. He went on to explain that even though he has problems with his feet the should be no reason why he does not walk.

We asked questions about our concern regarding fractures in respect to children with PD, Dr Mackenzie explained that fractures and dislocation were common with PD children because of their size and bone structure and the way their joints are looser then normal children but he said that if you wrap your child up in cotton wool then your going to hamper their development and enjoyment in an already restricted environment.

He explained that normal two year olds break bones and suffer dislocation so if it was god enough or them then it's good enough for Alex and the other PD children. This came as a shock to both Sue and I, because since he was diagnosed we did wrap him up in cotton wool especially after he broke his leg last year, then suddenly it hit us. Had we set him back in his development as over-protected parents.

Dr Mackenzie told us not to worry, we did what any parent would do, protect their child, anyway he joked, Alex is young and before we know it, he would be causing mischief and developing faster than ever, once he started walking.

Walking, I thought to myself "one step at a time Doc". Dr Mackenzie asked us to follow him and within minutes we were in the prosthetics department getting Alex sized up for a his new braces/shoes for his feet. We were initially told to come back tomorrow to pick his new braces/shoes up but this had to be cancelled as tomorrow he was having his MRI/MRA and we did not know what shape Alex was going to be in.

Our next appointment was with the Dr Dixya whose was to the Anaesthetic tomorrow. she just wanted to meet us and do a quick assessment on Alex because of the problems in the past. Right away she commented on him being small especially in the facial department. Was this a omen?? She explained that they would try to sedate him instead of intubation but would have a team ready just in case he got into breathing difficulties whilst in sedation.

The most common problem MOPD children have is that the patient swallows their tongue when their asleep during the MRI/MRA. She was confident that the procedure would be successful but we said you don't know Alex, he normally decides to have fun during these procedures and gives everyone a scare! I think we put her off because of the look on her face!

This was our last appointment of the day, before we new it it was 5pm, we were totally knackered, on our way back to the hotel, Sue and I were over the moon, we had for once been able to speak to doctors and listen to answers in a Primordial context over the last 2 days. Things started to make sense, more than anything we started to realise that we need to step back and let Alex get on with life and find out what life is all about.

Another thing hit us was, tomorrow we where going to find out if Alex had an Aneurysm, Moya Moya or not or would he cause trouble before the MRI/MRA. This caused us to worry a bit, especially has we had an hour sitting in our room before Val's father and Mother in-law came back with the kids to pick us up for tea.

The next 3 hours where probably the most pleasurable we had in a long-time, this is not taking away all the lovely people we have met in the last 17 days but because it felt like we were home. Val and all her family treated us like family and it seemed as if we had known each other for years! As I said earlier they have become very close friends and will be forever. Val is coming over in August and we can't wait to meet up with her and her family!

By the time we got home from Val's it was late 10:30pm but even though both Sue and I were tired we couldn't sleep not because of what we may find out after the MRI/MRA but because of procedure of putting Alex through the Anaesthesia. This is were Val come to our aide again she let Mike and Jess stay over so that we could have some time to ourselves and also so that we did not have to panic in the morning getting the Mike and Jess ready. I think we both felt asleep about 3am and before we knew it, it was 6am and after a quick shower and breakfast we where on our way to the Hospital.

We arrived in the hospital at dead on 7;30 and immediately we where taken to the Pre Assessment ward for Alex to have his heart beat and blood pressure taken. All fine up to yet. Then we waited a couple of minutes for Doctor Dixya to turn up and she introduced us to the team of seven doctor and nurses who were going to help put Alex asleep. She explained that they would come back in 20 minutes to perform another check up and then start the procedures. They did come back in 20 minutes but was very apologetic because the MRI team where delayed because of an urgent case that had just come in, we had to wait an extra 45 minutes but it suited us. To us this was a normal delay and something we're use to but to see their concern on the faces that we had to wait was funny in one sense.

Anyway the time came to start the procedures, first it to give him a drug to make him relax, I forget the medical name but they referred to it as Happy Juice, they administered it through his gastro tube and said it would take 15 minutes to work, withinl 60 seconds Alex was laughing his head of and performing as if he was drunk and on stage in some comedy club. This made us all laugh, he kept shouting hiya, pulling faces, playing peek a boo and swaying with the Dr and us. Dr Dixya was surprised and said that effect would only happen if he had it through line into his veins. We waited another ten minutes, by this time Alex was on cloud nine laughing his head off and seeing double (one of the side effects of the drug). The doctor said it should not normally take more than 30 minutes to knock him out. we looked at each other as we knew otherwise. Sue gave him a big hug, kissed him and said be good son and she will see him very soon, with tears streaming down her face.

Sue doesn't like going into any theatre/operation room because if tears her apart seeing any of the children lying helpless or being operated on, she does not like it when they have to give blood. But the main reason for her emotions this time, she was scared, Alex always misbehaves when they carry out procedures like this and she could not cope if things went wrong. I feel the same, but I always promised myself that I would always be at the kids or Sue side in situations like this, just in case anything did go wrong, at least I would be with them and they would not be alone, if the worse was to happen!

I gave Sue a hug and kiss and said be brave and it'll be over soon. I carried Alex to the Anaesthetic room and within minutes of laying him down they started the procedure. First they gave him a mixture of some bubble gum flavoured oxygen/gas to make him a little bit sleepy, as they wanted to put a line into him, did the gas work, no it didn't, Alex was having a time of his life on the Happy Juice, he was laughing constantly and talking to himself in his own little way, he even started holding the the face mask himself and every know and again he would put it by my face as it to say have a go at this dad it's great! They turned the mixture up and it seemed to work, so they attempted to get a line into his foot, once that needle touched him, he started screaming and fighting but then the pain went, he still cried but then laughed every know and again. They got the line in but could not get the blood to flow, they tried several times but it just wouldn't come out. After couple of minutes they withdrew the canula and attempted one in his left wrist. I wasn't scared or upset, this was normal for Alex, his veins are so small that its hard to find them and when they do they seem to close up very quickly. The one in the wrist seemed to work and now they started to administer the sedation via a drip, it worked after a little bit of twiddling about, Alex was out and in the land of nod. Before they sent him to the MRA/MRI room they wanted to assess his airway just in case he swallowed his tongue during the scan as the doctor noticed that every know and again his tongue would fall back and obstruct his airway a little, it would come back to the normal position but she didn't want to take any chances because if he did swallow his tongue whilst having his scan it would be a couple of minutes before they could get to him, to him help him breathe and after what happened last year when he had a cardiac/respiartory arrest - well they did not want to take any chances.

After a little more of fiddling about in his mouth which took about 10 minutes, they put in a tube call a LMA (I forget what the full name was - but will find out soon) which is a tube that fits into his mouth and down enough to allow air in and stop his tongue falling back. They then said it was time to go to the MRA/MRA room. I was not allowed to go in because it was only small and they needed all the available room for the medics just in case there was complications. But the first time in so many similar situation I was confident that he was going to be ok. Alex may be small but he's strong as a ox now, in the past he was always very ill. I made my way back to Sue who looked like hell. I reassured her everything was ok and explained what had gone on, this seemed to perk her up, especially when describing Alex new found skill as a comedian!

The next hour or so seemed like ten but right on cue they came out, he looked like hell, you always do when you have tubes and wires coming out of you but the doctors where happy with the way it went. They moved him to a Post Anaesthetic ward assessment and told us the drugs should wear of within 45 minutes, we sat with him for 15 minutes before the nurse watching him said go and have some lunch.

It was only 20 minutes after we left, we had finished our lunch and as we made our way back to the ward one of the nurse came looking for us, we felt sick when she told us where needed back on the ward. We asked if everything was ok , but in my mind I didn't want to know the answer, she replied yes it is, he was awake, a bit narky and wanted his mum and dad.

when we got back to him there he was doing his Betty Davis routine, yes he was sad but believe me he was acting to, he was sulking without tears and turning his head away from the nurses who tried to cheer him up, once he saw us, he give us his I'm feeling sorry for myself look and then cheered up. Within the next hour he was off the ward, playing in the foyer as if nothing had happened and we where so relieved and we knew again that our little frail boy that we wrapped up I cotton wool was no longer frail he was strong and even though he will always be small, he wasn't not little but had grown up into a strong little boy!

We were so proud of him and even the doctors were amazed with his recovery! In fact Dr Dixya fell so much in love with him that she bought him a Stuffed Giraffe that was just as big as him when he's sitting on the floor. he loved it so much and we'll feel that this helped him recover even faster!

Wow what a day, this week had been so enjoyable, how many times have you heard someone say that about their time in a hospital! We felt all the hard work was over now and we just had to sit back and wait until tomorrow for the news! Arrgghhhhh just when your having fun another reality comes and kicks you up the behind and wakes you up. But we put it to the back of our minds and enjoyed the rest of the day with Alex until Mike and Jess arrived back from Vals later. The 5 of us went out for tea that night and had one of the most memorable times, we just wound each other up and played jokes on each other!

One they way back to the hotel, we come across a magical site, a swarm of fire flies dancing in the darkness, we all stood amazed, this was a beautiful sight and one hell of experience, we where telling Alex to look and is head was all over the place, up and down, left and right, it looked as if he was still on the happy juice. I recalled our time in Disney which was supposed to be magical, for me Delaware was the magical place to be at this moment and wished it would be just as magical tomorrow!

Tomorrow came faster than ever, we even had a lie in, our first appointment was not until 10pm, it was to pick up Alex new braces/shoes. We arrived in prosthetics and there they were, the cutest smallest lightest things I had seen. Alex loved the sight of them, they had the stars and stripes all over them, I choose this design the other day because we wanted something to remind us of in years to come. The specialist put them on his feet and right away he was kicking his feet and he seemed to gesture that he wanted to stand up, we where surprised, we lifted him from the table and put him on the floor, he was standing with Sue holding onto him from behind and something happened that shocked us and left us speechless, he started to take his first steps and wanted to walk faster and he was smiling and looking at me as if to say look at me daddy, who's a big boy now!!!!!! I just broke down and cried, I grabbed his hands from the front and he walked to me. I don't care what anybody says but it was no coincidence, it was like a miracle, in reality the doctors was right his other braces were wrong for him, I joked and threw his old ones in the bin and said that's the best place for them. Prior to going for lunch we took Alex for a little walk in the foyer, he took some steps and decided he wanted to be carried, already he knew how to twist us around his finger with his knew found skill!

What a start to the day, my own Magical Kingdom was becoming a reality!! We just needed this run to continue and hopefully by 2pm today, all our fears would be over!

We had lunch and we tried to keep positive in another 25 minutes we would get to know the results of the MRI/MRA scans. As we walked to meet Dr Bober we looked at each other and we both looked terrified, we clutched each others hand tightly and as we met Dr Bober we put a brave false face on, don't get me wrong we were elated after what we witnessed earlier but now what we're going to find out is going to make or break us!

After the pleasantries, he told us the news that we had travelled all the way here for - Alex did not have any Aneurysms, he did not have the Moya-Moya disease and as a additional bonus, he advised us that the brightness (damage) to the part of the brain he suffered last year was no longer there!

Can you imagine how we felt! Well just say that albatross around my neck, the weight on my shoulder, that cross I've have carried for the last 6 months or more vanished, instantly. I remember standing there staring in disbelief at the MRI/MRA scans tying to figure everything out. It was a funny feeling and recounting it all I can say I didn't have a feeling of happiness, I think relief had overcome my entire body and left me stunned. Oh before I forget, Sue felt the same too :o) - joking aside we looked at each other, smiled, kissed each other, hugged Alex and saved the best for last we said a big thank you to Dr Bober.

This was it, our journey had more or less ended, and we had got what we came for and much more. Was it worth Yes, was it worth ignoring some of own doctors advice, definitely, would we do it again, Yes - we may need to but for the time being this chapter of Alex's life has been closed, for now we have got a lot to think about in the next 12 months, no more nightmares or tears, no more sleepless night, as parents we have done enough for Alex for the time being, we'll be their guiding him and loving him as normal, but the cotton wool has been removed, it's his turn now to start getting over the hurdles he encounters and become that Titan his family believes he is!

I will update the website in due course with pictures of our trip ( I promise), and before I forget, this would not have happened with the support of all the people who donated money, who set up fundraising events and raised money on behalf of Alex and who still are! There is a lot to update but I will explain how positively hard it's been to juggle life over the last 3 months!

I have more news to tell you all, exciting news from our point of view, some things may cause debates within our own NHS but before I do we just need to confirm a few things - watch this space!

Bye for now

John (Alex's Dad)