Weʼre raising £5,000 to Help fund research by the Royal National Orthopaedic Hospital into our son Harry's rare bone disease - Congenital Pseudarthrosis.
- Eversley, United Kingdom
- Children and youth
- Time left
- 81 days to go
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Peter White, John Daborn and friends are climbing Mount Kilimanjaro to help raise funds. Harry is ten years old. He has a very rare bone disease affecting his right shin called Congenital Pseudarthrosis which few have ever heard of, including most GP's. In August, 2016 he underwent his 13th general anaesthetic/surgery in an attempt to mend the broken bone. His leg has been broken since 2012. His first operation was at 18 months old.
The condition leaves part of the shin bone weak which causes it to break. The big problem is that once broken, it's extremely difficult to get it to mend. The surgery necessary to achieve bone union is complex and specialised which is why Harry is now being treated at the Royal National Orthopaedic Hospital in Stanmore. The surgeons have to pin the leg together using metal frames that protrude right through the limb and are then bolted together, rather like scaffolding. They're heavy, painful, come with high infection risk and make his daily life extremely cumbersome limiting his mobility to wheel chairs and crutches. Trousers have to be modified to fit and he can't get it wet which makes washing challenging and uncomfortable.
The greatest challenge is that this disease is so rare it doesn't attract research funding since there is no pharmaceutical payoff to justify any investment. The big drug companies just aren't interested! So we want to fund some research ourselves. Both RNOH or Great Ormond Street are handling most of the UK's cases and need as much assistance as they can with PhD funding and simple things like educating GP's to spot the condition early. A child undiagnosed by age 5 usually ends up with an amputation! We also need help to buy specialised equipment to help with Harry's mobility, specifically a wheelchair that can accommodate his metal frame.
If funding research helps all these children to have a bit less pain and a bit more childhood then it will be worth the effort.
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Rob Legge8 days ago
Our heartfelt thanks to the huge generosity shown by all of you lovely, lovely people. Harry had a bad fall on his frame and ankle on Saturday but A&E confirmed no broken ankle. Phew! So he's currently off school but he wanted to say Thankyou too :-). This all went a bit viral and took us by surprise but we're grateful for all your support.
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Dec 5, 2016
You are very brave Harry. Wishing you good luck for the climb dad.
Dec 3, 2016
Good luck raising the funds x
Dec 2, 2016
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About the fundraiser
Eversley, United Kingdom
I am Harry's Father. My wife and I simply want what every parent wants: the best for our little boy. For him to be able to walk without mobility aids is our goal and this project is about priming the research pump to find optimal therapies for this horrible disease.