Three-legged event to raise funds for limb op

Gwynn Jerome, whose parents Mike and Bethan grew up in Edinburgh before moving to Maine in 2006 to start their own business, was born last Valentine’s Day with an extremely rare condition called congenital pseudarthrosis of the tibia (CPT).

The condition, which saw Gwynn born with a permanent fracture in her left leg, saw doctors recommend amputation – until a specialist came forward with the chance to save her leg.

And to help the couple meet mounting medical bills, friends and family still on this side of the pond have organised a  fundraising three-legged walk this Sunday in Portobello.

Dad Mike, 31, who grew up in Portobello and attended George Watson’s Academy, said: “It did seem like Gwynn was very agitated when the nurses were checking that leg immediately after the birth.

“When the leg still seemed to be causing her problems three weeks later, we took her for an X-ray. The paediatric orthopaedist saw a mass in her leg and referred us to an oncologist, who biopsied it and ruled out cancer, but still couldn’t identify what was wrong.

“They ended up showing the pictures at a multi-discipline conference, but no-one had seen anything like it. Eventually they decided to circulate the pictures around the world and then a doctor in India diagnosed CPT.”

The Jeromes, who run a soup kitchen in Maine, were informed that children with the condition often have to go through years of complicated surgeries, which can still leave them with a painful, deformed limb, or having to have an amputation. When Mike and Bethan were told Gwynn’s particular case is associated with the worst outcomes, they took the agonising decision to go ahead with an amputation.

However, thanks to Florida-based Dr Dror Paley, a world renowned pioneer in limb deformity surgeries, the Jeromes have been given the chance to save their daughter’s leg.

Mike said: “She had the procedure last Wednesday, it took nine hours and involved a lot of stages. However, there is still a long way to go.

“If all goes to plan Gwynn will have to wear leg braces until she reaches skeletal maturity at the age of 16 or 17, but she should lead a normal life.”

Medical and travel costs have seen the family run up bills of $20,000 (£12,676), with more expenses on the horizon and no guarantee of support from their insurance company.

Mike said: “It’s so touching to hear that people back home are eager to help. I can’t wait to tell Gwynn when she’s older that people ran round Edinburgh tied together because of her.”

• If you are interested in donating or getting involved in the walk visit http://www.youcaring.com/medical-fundraiser/3-LEGGED-10K-FOR-TEAM-GWYNN/25920.

Long road to recovery

Gwynn’s operation involved many different and complex stages.

Dad Mike said: “Firstly Dr Paley had to open her leg and clear the fibrous tissue from the site of the break. There is also an issue of leg length discrepancy so he had to break the leg again to correct this. Then the broken part is fitted back together by sharpening the end of one bone, and hollowing out the end of the other so it fits together. A bone graft taken from her hip is then used to cover and unite the join and also give it more strength.

“After that Dr Paley made an incision in her foot, another in her knee and drilled down the length, inserting a rod which will actually extend as she grows, though it will need to be replaced when she is around eight years old.

“Then he fitted an external fixator on to the leg, which is a lot of big metal discs that go around. He also inserted several pins through the bone in her leg, to hold it all in place for the next three months.”