"When you are low with nowhere to go remember this, when you open your eyes, your heart, your spirit, yourself, there you will find the stranger called hope."

Anon

01/10/07

Hi everyone, it been a long time since the site has been updated and I've left comments here. Like usual, I can only apologies, as I know many people come back to the site to see updates, and again like usual, it's been due to a mixture of balancing family life along with all the other commitments we have at the moment.

The majority of our spare time has been spent replying to the thousands of letters, cards and emails and guest book messages that have been sent to us and Alex. Since starting this site back in March and Alex appearing in some local and national papers, we have received over 12,000 pieces of correspondence from around the world. We have replied to over 8,000 and still have several hundred to reply to, but out of all the pieces of correspondences, over 40 of them have changed our lives, especially 11 of them (I will explain shortly).

Additionally since Alex's documentary was aired, we have received a couple of hundred lovely messages and emails. We're very humbled by the contents of these messages/emails. Sue and I have been replying to the emails to these whilst having a break to celebrate me having a mid-life crisis, I hit 40 on the 28th September; and as a present Sue's Mum and Dad thought it would nice for us to get away for a couple of days just to recharge our batteries (laughing out load as I write) and for me to have that mid-life crisis! - I'll have to stop all those in-law jokes!!!

In respect to the documentary, we got to watch it on the Friday evening before it was aired. We had been worrying (in a nice kind of way) wondering what it would be like and when we sat down to watch it, we'll we cried through it also. It brought so many memories back to us. We cannot thank the TV Crew that filmed us (see our thank you pages in a couple of days, to see who these people are), as they looked after us from start to finish; and also we would like to thank the commissioners of Endelmol and Channel 5 for showing the interest in Alex and funding the documentary.

Now I would like to explain what has changed our lives, since starting the web site and also our fundraising appeal via our local newspapers, we have had over 40 emails prior to the Documentary being aired, either asking for advice regarding some of alex's underlying ailments, condition etc.... We have traveled around the country and met many of these parents to discuss and exchange experiences.

But out of these 40 emails, 11 of them opened a world of excitement for us. These 11 emails came either directly to us or via our local newspaper from mum's dad's or grandparents. The emails, where asking for advice as they thought they're children/grandchildren may have the same condition as Alex and they wanted to know how we got a diagnosis, they sent us pictures asking can we help them or we asked to see pictures to help us, or they wanted to advise us that they had a pre-diagnosis as their doctor's think they have a form of Primordial Dwarfism and could we help in any way.

6 of these families are have now been told their children do not have Primordial Dwarfism and have either been diagnosed with another condition, but some are still awaiting a diagnosis and a condition may not be identified. These latter children along with many many thousands here in the UK and around the globe will be classed as having a Syndrome Without A Name aka SWAN syndrome or if their lucky (as if this would help-parents who are in this situation will know what I mean) it may be unique to that child and the syndrome would be named after the child or Doctor who identified it.

Now, three families of the remaining five families have now been definitely diagnosed as having Primordial Dwarfism. For us as parents and our children this is terrific news, taking into account the children will lead a unique existence. We have been in constant touch with these families over the last 3 months or as much as we're all available, it's been a kind of counseling session for us all to share experiences (good and bad) and only 4 weeks ago, 2 of the parents and their children (Jon and Mel from Wrexham, whose daughter is called Finn) and (Jo and Robbie from Nottingham whose son is called Liam- both diagnosed as MOPD2) came up to Liverpool and we all met in person.

Additionally we met another family in Durham only two weeks ago after visiting a Doctor in the Institute of Human Life in Newcastle whose expertise is in Skeletal Dysplasia. This mother (Alison) got in touch with us via our guest book, to explain that she has a young son who has similar symptoms/characteristics as Alex, was at the end of her tether, was getting nowhere. We met mother and son (Rayth) again shared experiences and bingo the next day she was given news by the Doctor we had seen in Newcastle, that little Rayth also had MOPD2.

These meetings were wonderful events, a fantastic experience for us all and it has given us all a huge sigh of relief and has started something that will hopefully help these parents along with others to experience what we felt by talking to and meeting the American families, it will remove the fear of isolation, the uncertainty for the future and create a positive and rewarding facility. On the Friday before the Documentary, we did a pre-recorded interview with our regional ITV news team to discuss and talk about the documentary, Alex and how is he now, plus it gave us the opportunity to talk about the other children and what Sue and I want for the future. The full interview can be seen on the following link - www.itvlocal.com/granada/newsextra . It had to be pre-recorded for legal reasons, also it could not go out until after the "This Morning" interview. Alex also appears in the interview, so anyone interested in seeing how he's doing can see him in person.

Now something about the two that have not been diagnosed, they are two girls, one of them is aged nine who lives in Scotland, her mother got in touch with us via her local Journalist in the first week our site went live, she has the height characterstics of a child effected by PD but doctor's do not think she is PD as of yet. Additionally we have another child (a little girl) in Birmingham whose grandmother who got in touch with us whilst we where in America and they are still awaiting some form of diagnosis.

My heart goes out to these parents/grandparents as they are living under a cloud of uncertainty and no hope. Hopefully something will turn up and then all concerned can start looking to the future, especailly the young girl and her parents in Scotland! 9 years is just to long to live with that cloud!!

Furthermore only just 3 days a go , a mother (Karen) in Paisley who has a son aged 4 (Blair) who has been diagnosed as having Russell Silver Syndrome, another form of Primordial Dwarfism, has been in touch with us after watching the documentary. Once I get home get home from my mid-life crisis I will speak to Karen and see if she is up for a visit. Additionally we have 2 other individuals with Russell Silver and once we get the ok from them we will update everybody accordingly.

Additionally, 2 days ago another mother in London who has a 19 month old girl who is very small for her age has asked us for advice and help to identify if she has a form of Primordial Dwarfism. (Pease note - that we cannot and do not give give out diagnosis, what we can advise is what we have experienced here and the USA and also what we know about PD based on our findings.

Since coming home from America we have been very busy as you can guess from all the above but we have been busy for another reason, we have been learning the requirements (still learning) of setting up a National Charity and National Support Group. Its been harder than we first thought about it and discussed it in America with one of the mother's (Elizabeth, whose daughter is Chloe) in America, who set up a foundation and support group called Potentials Foundation (www.potentialsfoundation.org).

We have seen the benefits that this foundation has created for the families of PD Children in America and afar. Therefore hopefully in the next couple of months (if not earlier) a Charity (if we meet the required criteria) and Support Group called "Potentials Foundation-UK" will be created. Its been hard to understand all the legal framework for creating a charity at times, and have been getting advice from professionals, as and when we come across a hurdle but this has not put us off or disheartened us. If anything it's made us more determined.

Over the next couple of weeks a new web site will be created called www.potentialsfoundation-uk.org, once it becomes live and the charity viable we will let everyone know. Jon Finn's dad and myself will be working on this from next week.

Additionally we have been back in in touch with the specialist in Newcastle via email to ask the about medical support for the Charity in forms of a medical advisor/coordinator and research. at present we're awaiting a reply but will chase this up accordingly. This is one thing we need more than anything, even if our attempts on setting a charity fails, we can not let this fail.

This will stop doctors possibly misdiagnosing children (I'm sorry but it does happen), if will stop families receiving information about PD from the local Doctor’s/Consultants that is not consistent with other families, ourselves, the information that is on the internet and the information that the experts have.

Again the main areas of inconsistency is Aneurysm and the need of an MRI scan. Some Local Health Authorities or individuals recognise the aneurysm/moyamoya concern or the Family’s concern and provide the MRI/MRA scans, where some don’t recognise either. Therefore this discrepancy is always going to plant a seed of fear in the families, which again leads to families wanting to go America. There are other main inconsistencies are dietary issues, life spans, diagnostic procedures and no experts in the UK. Therefore, these main inconsistencies amongst other lesser ones, highlights the need for national coordinated process/facility.

More so it will eradicate the need to go to America for medical advice and treatment. In one perspective it will stop the following area's of stupidity:

1 No experts here in the UK.

2 No other Sufferers here in the UK (As we were advised 12 months ago and all the other parents have been advised.)

3 Similar Consultants treating two children with PD and not recognising they have it, and not thinking It may be an idea if you spoke to these parents??????

As Jim Royle would say "My Arrrrrrrrrrrrrrrrrrrrrrrrrrrrrr-tishoo".

Right over the next couple of days, I will be adding a couple pages dedicated to Our and Alex new friends, your in for a treat if you think Alex is cute then wait until you see these children, especially our first known diagnosed MOPD2 girl, Finn, blimey she's going to have all the boys chasing and she is going to take your breathes away with her beauty! Additionally we'll be replying a lot of emails and letters and then I'll do another update - I promise ;o)

Bye for now - John (Alex's Dad).