"We are all born for love. It is the principle of existence, and its only end."

Benjamin Disraeli

01/04/07

Well this has had to be the most hectic and enjoyable two and half week we have had for a long time long time. We have both been on an emotional and physical rollercoaster, with setting up the site, arranging fundraising events and answering all the emails we have received (over 400).

We cannot believe what we have achieved in such a short space of time. We are so proud of ourselves for what we've tried to do for Alex, to get over a thousand visitors in those two and half weeks have been out of this world. The feedback from the visitors to our site has been wonderful.

The emails we've been getting keeps us going and the comments on the Guest Book are superb. We could not have asked for more and we would like to thank everyone whose has donated money to Alex, we cannot thank you all enough.

Some of these email and the questions asked in them, have brought a lot emotional memories back to Sue and myself but it nice to go back in time because it makes us even more proud of Alex.

Visitor's have been asking where should they send Alex a card, present or their children want to send a picture they've made for him. Well last week we've sent off for a PO Box. When it's up and running I will let you all know via this page.

On top of all this, our Little Man has had a cold for a week and a half and has been on his oxygen most of the time but this has not stopped him getting about, he has so much energy that both Sue and I can't keep up with him at the best of times.

I'm so grateful that Sue's Mum and Dad live close by because we would be totally lost without them. Not many men can say their glad to have the in-laws close by :o) Joking aside Margaret and Alex have been there for us from the start and without them we would have fell apart in one way or the other, so thank you so so so much.

Right from tomorrow I will keep you all up to date with Alex life hopefully on a daily basis, but please excuse me if I miss some days as I have full time job to hold down and priorities take first place.

I will also keep you update with the fundraising campaign, couldn't believe the amount of people who has asked for daily updates as their as excited as us in hoping that Alex achieves his dreams.

So keep those emails coming, keep signing the guest book and if anybody have children give them a kiss and hug and tell them you love more than anything in the world, your reward will be that they tell you they love you and you are Greatest Mum, Dad or Both in the World.

Bye For Now

John (Alex's Dad).

03/04/07 -11:49pm

My first post above somewhat started in me saying "This has had to been the most hectic, enjoyable two and half weeks we have had for a long long time". Well before I start the next paragraph I just want you to say i was lying and you need to take the following into account,

"PLEASE DO NOT BELIEVE ANYTHING I SAY FOR THE NEXT COUPLE DAYS (THAT'S IF I GET A CHANCE TO), AS MY BRAIN HAS BECOME TOTALLY MUSH, I HAVE STARTED TO TALK TO MYSELF AND I THINK THAT OUR HOUSE PHONE IS SOMETHING FROM OUT OF SPACE WHICH IS TRYING TO TAKE OVER MY MIND; AND I LOVE ALL THE INDIRECT MEDIA PEOPLE THAT HAVE BEEN WANTING TO HELP ALEX".

God I feel better for getting that off my chest and out of the way, joking aside - well I'm laughing at this moment, no seriously the last 36 hours has really been the most stressful, enjoyable, stressful, enjoyable stressful, stressful, Oh no here I go again!!!!

I think you may have gotten the picture by now, I not really complaining, the media attention after our article in the Liverpool Echo on the 2nd April has been great, it's not everyday that you open the door to find the BBC, ITN, GRANADA all wanting to report on Alex, which I believe has helped us achieve a positive awareness of Primordial Dwarfism and also formally introduce Alex to the outside world, at least now, more people will hopefully look at Alex and say Hi instead of stare inquisitively. 

Alex has been in his prime today and it's made us proud to see him raise to the attention he's been given. His day started with a visit to the Hospital first thing in the morning to see one of his consultants due to a problem he has with his testicles as they haven't come down yet - got to go back in a couple of months for a scan and then decide what needs to be done - ouch (sorry if this offends anyone or it more than you need to know but hey this is what is web site is all about - and Alex, I'm sorry if your embarrassed when you read this in years to come - call it revenge for the day I've had - ha ha ha.). Anyway no sooner had we come back, the TV crews and reporters were waiting for us and this was they start of Alex's first live national appearance, he really enjoyed himself and loved the attention. He didn't even have a sleep during the day and still had enough energy to watch himself on the evening news - he was even pointing to himself, i swear he was telling us - look mummy look daddy that's me - I'm on TV.... He's a little show off and he knows it.

I want to thank everyone who has contacted us today, all the media - still got some major decision to make as most of the women's magazines want to do an article on him, we have had some really genuine offers put to us bit we need 24 hours to consider the options and restrictions these have, some will help us get to America a lot sooner, some will increase the money already raised, but these things need careful consideration and we need to weigh up the pros and cons. I will update you all, on the decision we make, why and what benefit this has for Alex.

Now the most important thing is The "Walking with Giants" Appeal has really taken off, in 24 hours just we have received £1,000.00 in online donations or via the Echo Newspaper. We have contacted all the people who have donated the money and personally thanked them via email. We are awaiting replies to these emails because we want permission from the lovely people to allow us to say thanks by putting a thank you on our web site.

We have more to tell but need a couple of days to finalise some issues via email and telephone call once these are complete we will you all via the web site.

I'm going to go know as it taken me just over an hour to type this up, I'm knackered I'm only had 3 hours sleep last night, just hope I can sleep, have a little lie in before going to work and more than anything I really hope the phone doesn't ring until I'm in work - Sorry Sue, you can have a go at me when I get home from work :o).

Listen just want to say thanks to all the visitors to the site today, and I want to apologise to the people that we have not had time to reply to the emails they sent us over the last two days, we will reply to you I promise you that.

Goodnight Everyone

John (Alex's Dad)

08/04/07 - 08:30am

Wow it's just been under a week since we started this campaign and what a week it's been. The first couple of days were manic, as you can see from my last post and then the last four days have been out of the this world. We have had over 800 hundred emails wishing Alex and ourselves all the best of the future, which we have replied to in person, hence the delay in updating the site. We have also replied in person to all the people who have made donations via the web site. This has kept us busy right through the early hours of each morning, so I apologise to everyone who thinks i'm a crank by sending emails at around 3am in the morning. 

At present we have raised £6,159.00 via on-line Donations (£1972.00) or through the "Liverpool Echo - Walking With Giants Campaign" (£4,187.00). As I said earlier we have sent emails to all the people who made the online donations to personally thank them; and we also asked if we could make a reference to them on our "Donations - Thank You" page the majority of them have said yes but we did also gave the option, that if no reply is received back we would take this as a request for the people to stay anonymous, which is totally acceptable but again we would like to thank you all again. 

Today I will be updating the "Donation - Thank You" page with all the people who have sent cheques, the problem I have is 99.5% of them do not have addresses where we can reply back to personally say thanks and ask their permission to make a reference on the site; I'm going to make this reference, without permission, i hope I do not offend anyone. If I do please please send me an email and I will remove your name.

The reason I want to include people names is for Alex's benefit. I want Alex in the future to realise what people did for him, this I believe will help him understand a lot about the society he was born into. This will also help him adjust to his own potential fears for the future, it will be part of his education of who he is and also help him realise no matter what hurdles he's got to face in the years to come, he will not and has not faced them alone. 

Alex is really enjoying himself lately, one of the aims of this campaign is to make people aware of Alex's condition, whereby when he's out with us people will come up and get to know him personally and not stare from afar and it’s worked a treat. The best thing that has happened over the last couple of days when we’ve had to go out is the amount of children who have approached Alex and wanted to cuddle him, talk to him and play with him has made me cry unashamedly at times in front of these children and parents.

These children have made lovely comments about his size and some (and these are only 7-10 year olds) even went on to explain the difference they saw in him when comparing him with their 2 year brothers and sisters; and realised immediately some of the problems he likely to face. This is what I want more than anything in the world, these children are the next generation, these are the children who will grow and age with Alex and it’s these children who will deflect and eliminate all the potential negativity that could, might and unfortunately affect Alex’s existence. It’s these children who will walk with Alex, not as giants but as equals, standing should to shoulder and accepting each other for who they and he are and vice versa.

I’ll leave it at that for the moment, I hope everyone has a lovely Easter, where going to visit all our families, then were going to spend then remainder of holiday giving some quality time to Mike and Jess, not that’s they’ve been neglected, but they’ve helped us tremendously over the last week looking after Alex more then usual whilst Sue and myself have been dealing with the campaign.

Speak to you all soon

John (Alex’s Dad)

10/04/07 - 07:30am

Good Morning everyone, Alex's dad here John, hope you all had a lovely Easter, the weather was beautiful here in Liverpool, well most of the time anyway. Alex really enjoyed himself he's been out and meeting people. When I say meeting people he's just been out generally and the response from people has been even more positive, than the other day, were not getting the stares we use to get, adults and children have been approaching him to say hello, so if anything, our wishes of making people aware of Primordial Dwarfism is working even more than we hoped. I want to thank all the people who have taken the time to stop and talk, you all made our Easter ever the more special.

Today, Alex is going to appear in a article in "Closer" magazine. Its something we decided to do to help with the fundraising campaign and we will receive £1,500.00 for the article. We want to explain a little bit about this and the reason behind it below.

Just after the article appeared in our local paper, it was syndicated around the UK to help with the campaign. We did not receive any fees for this only the £100.00 the local paper donated to start off our campaign, which was good enough for us, we would have been lost without the "Echo" and cannot thank Mary Murtagh enough for all she has done. But after this initial tabloid exposure, you can imagine the amount of interest this generated in respect to; Media Agents wanting to represent us to help us "sell our story"; and the magazines getting in touch with us direct and this has not included all the different TV production company offers. The fees have range from £5,000.00 - £10,000.00 from the TV companies and anything from £1,500.00 to £7,000.00 with the magazines.

Some of the magazines offered to fly us to Canada or the Convention to do a joint article article with another family affected by PD. We could not accept any of these on moral and ethical grounds, one being that there are a lot of families in the USA/America who are finding it hard to raise the funds themselves and trying the same approach as us and if their appeals are not successful then I do not think it would be fair for us to show up on their doorstep and have all the attention. I do not think this is a acceptable or appropriate way to do things.

We are considering to speak to the BBC next week as they have offered to do a Horizon type documentary about Alex but more to due with the effects of Primordial Dwarfism from a health and science angle. We believe this will benefit everyone especially raising the profile of the condition. There will be no fees involved in this, which were totally happy with this.

Right as you can see from yesterday, our appeal is going well but something else has been offered to us, two companies have jointly offered us flights to NY for one of the trips, we have provisionally taken there offer up, I will tell you more about this is due course, once everything is ironed out.

Another thing that has happened since our appeal went national is that we have been advised that there may be other children with PD in the UK. We are awaiting contact from their parents at the moment. This is is beyond our dreams as this means that Alex will not be alone in the UK, but we are still awaiting contact to formally confirm this. If these are confirmed, I believe we need to get together and help each other. Questions need to be asked from the NHS also, as how have we all slipped through the net??

Tomorrow is Alex's birthday, so poor Sue is having to run around and finalise things for the party he's having. Like normal I'm getting away with murder, I've got to go to work :o)

I'll leave it for that for now and speak to you all soon.

John (Alex's Dad)

14/04/07 - 11.30pm

Hello, sorry for the lack of posts here but just been very busy trying to balance family life, fundraising commitments and updating the site. Still replying to all the letters and emails we have received, but again I promise the people who have been in touch with us recently will get a reply by Tuesday.

This is going to be a short post until tomorrow but just want to let all the people who are following Alex's life in one way or another via the what has happened recently, the most important thing is "Alex is going to America"

I just want to say something that comes from deep within my heart "THANK YOU SO SO MUCH", . Each and everyone of you that has donated money or services over the last 13 days will forever be in our debt. The vast majority of donations have come from within the Merseyside area after reading an article about Alex 12 days ago in our local paper. I have already told you what I think of you and for those who may have missed Fridays "Liverpool Echo" here is the contents of the letter I sent to the Echo.

Dear ECHO readers,

We really cannot believe the kindness and generosity that has been shown over the last 10 days.

We did not know if our dreams and wishes could be achieved but we had to try because of the love we have for our son.

These dreams and wishes have become a reality, but we played the most minor part in this. When Alex is old enough to understand, he will realise that it was not his mum, dad and family who gave him his first and best opportunities in his early years, but the people of Merseyside.

We want to thank everyone who has supported us via all donations, emails, letters and cards; we will be forever in your debt.

It is Sue and I who now walk in the land of giants, it’s called Merseyside. Your generosity and support has made us realise that Alex will never ever be alone.

Additionally in the near future Alex will be standing shoulder to shoulder, playing and meeting with children/adults his own size.

We will ensure that every day will be captured on camera and video and will serve the purpose to remind him that this was all down to you, each and every one of you.

With love and thanks from

John and Sue Connerty

I meant every word i said. You are all part of our family and we will never forget what you did in those 10 Days. To raise £10,000.00 in that short space of time is unbelievable.

I will also be sending a letter to the "Guardian Newspaper" via email tomorrow who ran a little article about Alex which resulted in many readers donating money via paypal and I have to say some of the sums they donated helped us tremendously - I also want thank you on behalf of all of us in the Connerty Household - your generosity will not be forgotten either.

These last 10 -12 days have been the most emotional I have ever felt, I have shed tears every day during the last 12 days reading some of the emails, letters and telephone conversations during these days . I have even more hope for my my son and it's all down to the people who have supported us one way or the other. Thank you so so much.

I'll leave it for that for the time being but revisit this page over the next couple of days and you'll see I've got lots of news to tell you.

John (Alex's Dad)

15/05/07 : 11:00pm

Hello everyone, hasn't the weather been superb, had all intention to spend most of the day updating the site, but ended up in the garden having a BBQ with the family.

Alex has really enjoyed himself lately, first his birthday was excellent he really enjoyed himself. We had a party for him which was laid on by Robbie and Annette the owner of The Fiveways in Ormskirk. We cannot thank them enough for what they did for Alex. They have a Funhouse attached to the pub and wow did I have a whale of a time. Life cannot be that bad when a 39 year man gets the chance to have a ball fight with 14 children in the ball pits, I got slaughtered by these kids and I have really got it in for Charlotte, Joe and Kieran, they laid into me good style, can't wait for the next party they attend, going to gate crash it and give them some revenge.

Alex joined in the fun as well he sat there and threw balls at everyone, you could see the excitement on his face and spent every chance he could in the baby play pit. I sat with him most of the time but I wished he could have been able to walk/run around as you could see the frustration on his face when the other kids went on about their own games. Not that they left him by himself but all the same he wanted to follow them. Were going to work on this over the coming weeks, just spend that more time in supporting him to stand and also play games where we can encourage him to stand up. It's a pity because he can walk/run around the house in his walker. Family and friends say he just like being carried around and has become lazy - he got that from me - not that I like being carried around but the laziness could be a characteristic he got from me - ha ha ha.

Alex spent most Thursday playing with his new toys, well more like throwing them all over the place. For someone so small, he got some power in the arms, did send they an email to the English Cricket Team to see if they needed a fielder (well I really said he could field better than most of them out there and as he had nothing better to do with his days, I offered his services to them) but for some strange reason they turned us down, possibly something to do with his age??

Thursday night Sue and I both attended the Old Roan British Legion in Ain tree after we were invited by The Mersey Cats Organisation via a couple of emails from two of the members Denis and Andy to come down as they would like to help us with our fundraising night and also Alex's future. They knocked the stuffing out of us when they presented Sue and Myself with a cheque for £1,000.00 and also told us they were going to do a fundraising night in June. Just want to thank all of them for the generosity they showed us that night, Beryl, Wally, Val, Bern, John and all the other members we cannot thank you enough. Beryl thanks for keeping me amused all night, long you put a big smile on my face with your wit. Got the chance to see the Band whose playing at our fundraising night on the 11th May, they were good but come on Steve the excuse that your just getting to use to wearing glasses when you played the first couple of notes wrong didn't cut with me - lol. Joking aside got to say a Big Thank to "Searchin'" they helped us a lot and again we cannot thank you enough. Please visit the Merseycats and Searchin' websites via our links page, you'll see what excellent work they do for children and charities.

Friday day was spent writing letters and replying to emails, were nearly on top of things here so this page should be updated daily (believe me).

I'll leave it a that at the moment but just want to thank all the people who are still donating money, we have told people we have achieved our target and they can stop if they want to. We'll leave it up to everyone to decide for themselves. At present the total raised is around £12,000.00 but this is going to increase because so many people our still doing sponsored walks, runs, and bike rides and other events. There are shops still collecting money in buckets/jars. We even picked up £140.00 donation late last night from the manager and staff of Pizza Hut, based in Aintree Industrial Estate, guess how they raised most of the money, your not going to believe it, Aintree Race Course is 5 minutes away and they get bombarded with race goers wanting to use their toilets urgently after the days races are over, so they let them but asked if they would like to make a donation to Alex's appeal. All I can say is that is an outstanding, only Merseysiders would think of something like that. A big thanks you goes to ALL the staff at Pizza Hut. I'm still laughing thinking about that one.

It's 12:45am and I've got to be up early for work.

John (Alex's dad).

17/04/07 : 10:30pm

Hi everyone, I apologise to everyone who comes here regularly to see what's been happening and then find that nothing has been updated. I've got to admit it's hard, I didn't really think it would be this difficult. There's not enough time in the day (night) to do everything I need to on the site. So it your willing to accept a sob story, here it is, I work and most nights I bring work home with me (I'm a full time Trade Union Official) as I don't have enough time in the working day. I take over from Sue in looking after Alex and also try and have some time with Mike and Jess. Feeling sorry for me yet - is that a arrrrrrrrrrrh I can hear. Ok I tried for a bit of normal sympathy but guess it doesn't cut with you all.

Ok back to the important things, Alex is still doing ok, we bought him a a blow up ball pit with some of the money he got for his birthday money, he loves it and doesn't want to come out if it. The pit didn't come with any balls so we bought a bag of them, a bag that had 200 balls in. That was a big mistake, I told you he likes throwing his toys about, well what the first thing a child does when he's got 200 of them at his disposal, Yep that's right, we now have a living room full of balls and no matter how fast we collect them and put them back in the pit with him there out again. He's got me demented and he know's it. To be honest it's been the best £15 quid we've spent on him. He sits in to watch the TV, he sit's in when he's being fed and he even loves it more when Jess get in it with him. I'll put a couple of pictures in the Photo's Page tomorrow (ok within the next couple of days).

Alex had a hospital appointment yesterday for a check up on his lungs in the respiratory Unit. His lungs has been a problem for him especially during the seven months he spent in hospital last year, he had several collapsed lungs and partial collapses on top of many chest infections, his last infection being four weeks ago. We've always been worried that his lungs may be damaged permanently and he would be always classed as having Chronic Lung Disease but yesterday we were told that as he no longer needs the oxygen daily and his lungs are working perfect, he's no longer classed as having Chronic Lung Disease. This is great news for us and more so him. We've always been worried that if needs ever needed to have a lung transplant, would it be possible to transplant another child's lung into without it affect him i.e. would the new lung outgrow grow his body and pose him another set of problems. It's one question that been hanging over us for a while and one were going to ask when we get to see the specialists in America.

Which leads on to the trip to America, as you know we have have been given free return flights from Luton to New York by two companies, we have booked the hotels in New York and Seattle, and booked our convention places. We will get to see the doctors here for an hour or two and then formally make arrangement to see them in Delaware in September. We are so so excited. Thank you all so very much, it's all down to you!

I'll leave it at that for the moment.

John Alex's Dad.

24/04/07 : 7:30pm

Evening everyone, I just cannot believe what's happened over the last week, when we thought things were slowing down and we were getting on top of all the emails, letters and payments, things got even more mind blowing (hence why the site has been neglected - did try to update it on Sunday but had a terrible hangover and I'm blaming it on a man called Dave from the MCA - read on to see why).

Over the last week we have had a continuous flow off donations via the "Liverpool Echo", our PO Box and some via our online donation facility. When I said mind blowing, I mean totally out of this world, the total raised and donated is just under £21,300.00. Up to last Sunday we knew we had raised up to £16,000.00 but with all the fundraising were doing with the help of family, friends, and local community this has hit the £21k mark. There is a strong possibility that by the 11th of May we could have hit the £25,000.00.

It doesn't seem that long ago that I was on a train going to work and a work colleague I'd meet making the same journey would encourage to start some fundraising so we could get over to America. All I can say is thank you Desna, her full name is Desna Moss (hope you don't mind Desna). If there's one person who I want to credit to giving me that kick up the backside to realise our dreams it's her - by the way she nagged me really and I had to do something to shut her up - the train and bus journey to work was my time to catch up with some sleep as Alex keeps us awake most nights :o)

So within 7 days of her her last pep talk, I knocked up this web site and Sue had started arranging a fundraising night and friends started our sponsored events by offering to run the women's Liverpool 10k. I still pinch myself to see if I'm dreaming but again it's not a dream it's .

I also want to thank a couple of very close neighbours, Carol,and Roy; and Julie and Neil, they have help us a lot with ideas for fundraising, but they have supported us lot in more ways over the years along with Ann and Riener our next door neighbours. in fact poor Ann became our secretary when we were in-undated by the PR Agents wanting to act on our behalf. When I say a secretary, these Agents ended up ringing her, asking if she could knock on our door so they could speak to us because we were ex-directory. She's one worldly woman and nothing seems to faze her.

Going back to the fundraising, on Saturday morning I went back to the place I was born (Scotland Road) as my cousin Angela, her friends Marion and Hayley was doing a fancy dress sponsored walk whilst collecting money in buckets by visiting pubs in the Vauxhall area, whilst taking a detour around Great Homer Street Market. In the space of 2 hours they had raised over £650.00 including sponsor money they raised before the walk. It would be totally unfair to single anyone since we started our appeal because I have seen generosity that has humbled me and brought tears to both Sue and myself, from pensioners donating what they can (on limited budgets) to individual people families, businesses and other communities donating what ever they could spare to hundreds and some thousands of pounds, but I was choked by the generosity of the people of this area, it's a area that still believes in the community spirit, even though it's been broken up numerous times over the decades since the 60's, it's a area that's is proud of it's history, it's a area that rises up against the odds, many a time beaten but never broken, it's a area that your proud to call your home, all I can say is thank you so much, i'm very grateful to everyone who has helped us.

I would also like to thank Larry and Linda Buckley, they run the Parrot Pub on Scotland Road, on Saturday they laid on a buffet for all the people who turned out for event and also all their regulars who donated money before, during and after the event. I would also like to thank Larry personally because he loves kids and will do everything he can to help them whatever the reason. I've known Larry since I was a snotty nosed kid growing up and knocking around Scottie Road. He ran kid's football teams to keep us of the streets and even the local boxing club all those years ago. As we grew up and things started to change for the worse in the area, Larry took me for a chat one day, told me the pro's and cons of growing up in the area and it changed my life for ever, you could say along with the advice my dad always gave me, i wouldn't be where I am if I hadn't had that chat. On the few occasions i go back and visit Scottie Road, I bump into Larry every know and again, I still thank him for that chat and will do in the future - to the point that he would love to tell me to go away - to put it in a nice way.

Saturday evening we were invited to a place known as the MCA Social Club (Maghull Community Association) in Maghull where we live, (I have lived here for 4 years, Sue has lived in the area for somewhat 30 years), well all I can say is thank you so so much, I cannot express the feeling we had that night, we were called to stage and was presented with a cheque for £1760.00 by Ian Callaghan (Liverpool Football Legend) on behalf all the members, management and staff of the MCA. Over the Easter Bank Holiday weekend they ran raffles, auctions and collected donations. I was so so nervous collecting that cheque and also for the first time in a long time found it difficult to express my thanks because of the emotions I was feeling, i'm still stunned by this gesture and it was Sue turn to feel very proud and alongside myself.

After the presentation I even had the chance to personally spend time with Ian Callaghan and talk about football but by then three pints of lager had kicked in and I realised even more that I was in the presence of legend (dare I say Giant), I have never sweated so much, I have never talk a lot of crap and to this day I still cannot believe I met Ian Callaghan. By the way this is the first time since Alex was born that a full alcoholic drink has passed my lips and I can tell by the next two pints Sunday day was a washout and my body wanted a divorce from my brain/head.

I also want to extend my thanks to Dave Cranny of the MCA, this man took us under his wing and has offered us support in other forms by the way of getting us out as a family again via the MCA. This may sound as if we locked ourselves away since Alex's birth, but during the first 18 months of Alex's life because of his health we could not do much as a family, but as Alex health is reasonable good were going to take up is offer and join him, the MCA and all the members for future events - but I'm just going to stay on a pint of coke.

I haven't spent anytime writing about Alex but I can assure you that he's well, he's happy, so are Mike and Jess.

Tomorrow I will do another post and try to update the site. We have still got a load of thank you replies to write up and send , please bear with us as were going to put these on hold until the weekend. As I need to seriously update the site, i've let it slip recently but I've we really wanted to reply to all the people who have helped us in one way or the other.

Bye for now

John - Alex's dad