156%
£7,825raised of £5,000 target by 98 supporters

Weʼre raising £5,000 to Help fund research by the Royal National Orthopaedic Hospital into our son Harry's rare bone disease - Congenital Pseudarthrosis.

Location
Eversley, United Kingdom
Time left
35 days to go

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Story

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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Updates

3

  • Rob Legge

    Rob Legge

    20 days ago

    Rob Legge

    As we draw ever closer to the time when the intrepid team will be making the ascent up Kilimanjaro, once again my heart is warmed by the staggering generosity shown by so many. On behalf of Harry, we thank you all again for your continued support, benevolence and downright spirit. We wish the boys every success as they set off at the weekend and whether they reach the summit or not matters not - they got of their backsides and tried....and that takes guts. We salute you chaps. The best of British to you :-) Rob (Harry's Dad)

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  • Rob Legge

    Rob Legge

    a month ago

    Rob Legge

    Thanks again to all the friends of Chalkie and John for your kind donations. You're all totally awesome for supporting them and therefore our Harry :-)

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  • Rob Legge

    Rob Legge

    3 months ago

    Rob Legge

    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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3 months ago

Rob Legge started crowdfunding

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Supporters

98

  • Star and Garter

    Star and Garter

    Feb 21, 2017

    Well done Andy - it only took 13 minutes to raise £25 for this worthy cause.

    £25.00

  • David Baker

    David Baker

    Feb 21, 2017

    Well done and such a fantastic cause.

    £30.00

  • Martin Gregory

    Martin Gregory

    Feb 20, 2017

    Well done boss

    £50.00

Rob Legge

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About the fundraiser
Rob Legge

Rob Legge

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.

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