A Brighton Mum has launched a crowdfunding campaign in a desperate bid to save her young daughter’s leg.
Westdene Primary School pupil Kyra Warrell, age six, was born with a rare condition called Proximal Focal Femoral Deficiency (PFFD), which means her left leg is deformed and will not grow properly.
Surgery that would lengthen Kyra’s leg is available, but only at a specialist, overseas clinic. Doctors in the UK have so far offered only to amputate her leg, so that she can wear a prosthetic limb more easily.
But Kyra’s mum Rima Warrell, 39, is vowing to put everything into the fight to save her daughter’s leg.
Rima said: “We are working longer hours and are putting all our savings into this. We’ll max out our credit cards and, if we have to, we’ll sell our house.
“This operation absolutely has to happen. The alternative is a lifetime of disability.”
The family needs to raise £58,000 so Kyra can fly to Haifa, Israel, where she’ll be operated on by world-renowned orthopaedic surgeons from the Paley Institute, Florida. It’ll be the first of a number of operations Kyra will need, up until the age of 16.
“We’re hoping that, by getting the word out, generous people will donate to Kyra’s fund and help us raise the £58,000 we need for her first operation in February,” says Rima.
“Our dream is that Kyra can walk with both feet on the floor. This dream would be permanently taken away if her leg was amputated. And, as an amputee, Kyra would face a lifetime of physical difficulties.”
PFFD affects fewer than 1 in 50,000 children in the world. Rima said: “Although the NHS does lengthen legs for those with PFFD, several orthopaedic surgeons have told us it’s too difficult for the NHS to treat Kyra’s leg by lengthening, due to the severity of her case.
“That’s why she needs to be treated by the world’s best surgeon. He has the experience, technology and the team behind him.”
Kyra, who lives with her mum Rima, an event manager, dad Neil, 45, an NHS project manager, and sister Mia, age 4, has a deformed hip, a shortened left thigh and an unstable knee and ankle. She has to wear a bulky and heavy prosthetic to help her walk, leading to pain and secondary medical problems.
“Kyra can’t wait to take her prosthetic leg off. It’s hot and makes her leg and muscles sore.”
But Rima says young Kyra is also determined to live life to the full.
“Kyra is bright, joyful and mischievous. Like any other little girl her age, she loves playing energetically with her friends,” says Rima.
“Kyra loves ballet, but her prosthetic stops her from really getting involved. She has also tried football for junior amputees with Brighton & Hove Albion, but she feels slow and her real foot gets in the way if she kicks the ball.”
As Kyra gets older, the deformity will become more pronounced, meaning that her prosthetic will be more difficult to manage. This will lead to complications with Kyra’s hips and spine.
The only option available in the UK is for Kyra’s leg to be amputated above the knee, in order to get a better-fitting prosthetic.
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