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Harry was born on the 25th March 2008.
He had a rough start to
life, and had several incidences of being rushed to hospital because
he was not breathing, He ‘failed to thrive’ and after 13 months and
numerous trips to various hospitals and doctors, he was diagnosed with
1p36 Deletion Syndrome. This means that he has a large piece of
chromosome 1 missing (del 1p36.21-32) from every cell of his
body.
Modern DNA testing has only recently allowed the condition
to be defined. Blood tests have shown that the condition is not
related to either parent or family. Within the condition, there is a
wide variation on which parts of the chromosome have been deleted and
how long that deletion is. Harry’s chromosome deficiency affects his
growth, development, speech, hearing, sight, mobility, digestion and
motor skills.
Harry was not reaching his early milestones, and
was nearly 10 months before he started to react to stimulus.
At age 6 he has come on in leaps and bounds and amazed doctors who said he would never sit up, and never walk. He recently walked down the aisle with help from his two aunties at his mum and dad's wedding!!! He cannot walk unaided or talk, but can 'bum-shuffle' and is very vocal and makes understood his likes and dislikes, wants and needs through a variety of grunts, looks and noises, which can be very comical at times. He understands what we say to him but he is not able to respond vocally.
Harry is a happy child and rarely cries unless in pain or
distressed. In many ways he is a normal little boy: he wants to play
and do the things he enjoys. He enjoys physical experiences such as
swings, slides, trampoline, playing ball, going in the swimming pool
and sea, exploring the world in his walker, watching his favourite TV
programmes (including Countdown!), eating his favourite foods and
beating up granddad Paul!
Harry attended the excellent Children’s Resource Centre (CRC) nursery
at Darenth Valley Hospital and now attends Ifield School in Gravesend,
which he loves. He got ‘pupil of the week’ award in his first week for
settling in so well: now he has just finished his 2nd year at school
and will be moving up a class in September 2014.
Harry has a book of pictures and pictograms that he recognises.
We use simple sign language (Makaton) to augment what we are saying to
him although we know that Harry understands a lot more than he lets on.
Harry continues to develop new skills, although more slowly than
other children his age.
Harry’s mum and dad are in touch with parents of other children
with the condition through the support group http://rarechromo.org/html/home.asp,
In August 2012 they attended a weekend event where they met
other families with 1p36 children. Medical specialists who are
studying the relationship between the parts of the chromosome that are
deleted, the effects on the children and ongoing management and
therapies for the condition also attended and we learnt a lot. Harry's
mum and dad keep in touch with some of the friends they met there and
firm friendships have formed.
We continue to fundraise for Harry as he will need care for the rest of his life. Any amount, no matter how large or small, is gratefully received and put into Harry's account. We have no admin costs at all as these are absorbed by Harry's family.
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