Town 102 Ice Illusions

    Thank You!!!!

Natasha & Martyn would like to thank everyone who has kindly donated and helped to raise the money for Jack's helmet and treatment. 

We have reached our target and we are amazed by the amount of support we have received. 

We are very grateful to EVERYONE who has helped.

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Jack's Story -

 I just thought I'd take this opportunity to let you know our story so far, in the hope that making you aware of this condition, it may stop you or someone you know from having to go through what we are going through.

Our Baby was born in November 2007 with a perfectly normal shape head. By 1 month old we noticed that Jacks head had begun to flatten at the back and by 3 months it was totally flat.

On speaking to a number of Health Visitors and GP's (since march this year) they all told me it was nothing to worry about and in time it would sort itself out. They advised me to keep him off the back of his head as much as possible and encourage him to turn his head when asleep.

Despite much trying nobody would help or could offer any further information.

At Jacks 10 month check with the Health Visitor, I was not prepared to be fobbed off and after she investigated this further she did seem to think there was cause for concern and referred me back to my GP.  In turn the GP referred us to the Ipswich Hospital but they could offer no help as there is no funding for the condition under the NHS.

Having been giving the name of Plagiocephaly and Brachycephaly  I looked it up on the Internet and found so many similar storys and more importantly that there is help available.

The NHS regard the treatment required as cosmetic and therefore do not allow funding for this. (There has only ever been 3 cases funded in the UK for really serious deformation but they campaigned for many months and this is time that we don't have, as treatment is most effective from 5-7 months old) In time Jack may suffer from excessive headaches and possible eyesight and hearing problems. Not to mention he would not be able to wear a bicycle helmet or glasses and would be sure to suffer bullying at school. (So how this is only considered cosmetic I do not know)

We decided to take matters in our own hands and had an appointment at a specialist Starband Clinic in London.

www.ossur.co.uk

The Clinician took measurements and worked out the severity of Jacks case. A normal head measurement works out to be 80%, anything over 90% is considered need for concern and treatment. Jacks head measured at 104% therefore a severe case of Brachycephaly.

We decided that we would go ahead with the treatment. He had a scan and we returned to the clinic 2 weeks later to have the Starband Orthosis Helmet fitted. Jack will have to wear this for 4-6 months for 23 hours a day. This will encourage his head to grow into a normal shape.

The fitting went very well and he didnt seem to mind having it on.  Over the next week we have to build up the time he wears it, starting from 1 hour periods upto 23 hour periods.

4th November 2008 - Jack has now had the Helmet for 2 weeks.  He has one or two sore patches but they are not bothering him too much.  He has been sleeping fairly well and we are hoping to see an improvement when we return to the clinic on the 18th for a check up.....................

18th November 2008 - We went for Jacks first proper check up.  We can deffinately notice an improvement the shape of his head is not as 'sharpe' as it was.  The clinician measured a 1% improvement, so although this is only a small change its a step in the right direction.  Fingers crossed for the next 4 weeks.............

Jacks December 2008 check up found a further 2% improvement. Slowly but surely we are getting there !

14th January 2009 - A 2% improvement and confirmation that all the growth has been in the right place, his head is looking a lot better.

16th February 2009 - A steady 1% improvement but for his age still good.  6 weeks till our next appointment and that may be the last depending on whether his skull has fused.

April 2009 - We returned to the Clinic and due to Jacks age and his growth rate we decided that this would be his last check up.  Jack had another scan and the report showed that Jack had had a  total of 10% improvement, which was a very good result for someone of his age.  All Jacks head growth had been in the correct place and therefore his overall head shape was much improved.

Once again we are so gratefull to everyone who helped raise money for his treatment.  I must say we won't miss the trips to and from Wimbledon but we are very glad that we gave Jack this chance and hopefully no future surgery will be necessary!