Harrison Smith Future Care Fund
£26 raised
3% of £1k goal
3 contributors
4 Years running
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 ...

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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