Rare Disease Day: Rio's fundraising for his Paralympic prosthetics

Today is Rare Disease Day and DysNet is backing the day's aims to raise awareness of rare conditions.  Dysmelia covers many conditions and all types are rare occurrences. 

DysNet's parent, EDRIC is a member of EURORDIS, the European Rare Diseases organisation which is coordinating Rare Disease Day. 

Helping your child to experience as normal life as possible when they have a rare condition can be very expensive, as Rio's family have found out.  They've had some generous help, but still face long-term fundraising efforts... 

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The family of a young boy from the UK who was born with a lower limb deficiency, have launched a fundraising drive to help provide him with replacements for his high-tech prosthetic running blade as he grows. 

Four year old Rio Woolf, was born without a tibia, knee or ankle joint and had his lower right leg amputated at 14 months.  Three years on, like many little boys, Rio dreams of following in the footsteps of his Paralympic gold-medal winning idol, Jonnie Peacock. 

After meeting Rio, Jonnie put his parents with UK prosthetic company, Dorset Orthopaedic.  The company's MD, Bob Watts, set about securing sponsorship for an Össur running blade.  And ended up donating the prosthetic socket himself. 

Rio was thrilled when he was fitted with a lightweight with a blade decorated with his favourite character, Fireman Sam. 

Juliette Woolf, Rio's mother said "We took Rio along to the Paralympic Primary Games for children and he loved participating, even with his NHS leg.  He showed he loved to run.  The only problem was that his old NHS leg was very heavy.  Despite this he was running quite fast, he had the speed but not the right equipment."

The blade and socket Dorset had made for Rio is 150g lighter than the NHS prosthetic legs.  The blade is made out of carbon fibre which is very light, springs back into shape, and 95 per cent of energy you put into it will come back during running. 

Rio's physiotherapist from Playskill commented: "Having a prosthetic blade at a young age is an amazing opportunity for a young child.  With it comes the ability to run with peers.  Often children with an amputation are left to walk while their peers literally run around them. 

"Rio can now run, jump and play football and get involved with Paralympic sport that much earlier.  He has a better quality of life and a new sense of freedom and movement."

However, as Rio grows, his current prosthetic will need be replaced and each new blade costs upwards of £4,000 so his parents need to keep finding the funds to pay for new blades as time goes on.  The interval for replacement depends on the rate at which Rio grows. 

To help, Juliette has started a JustGiving fundraising page and although it has already brought in almost £1800 the family face years of trying to keep up their efforts. 

Rio plans to attend LimbPower's "Learn to Run" Clinic in Chelmsford, Essex, on March 9th. 
Hayley Ginn, Jonnie Peacock's former Coach has taken a keen interest in Rio and will be helping him learn to use his blade in the best way to get the most out of it. 

You can find Rio's Just Giving page here: www.justgiving.com/Juliette-Woolf/