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Headline: VIDEO: Boy with short leg has undergone two gruesome operations - now he needs prosthetic so he can play football again
Caption: WORDS BYLINE: Lucy Turquand-Young A boy born with one leg shorter than the other is desperate for a prosthetic that will let him go back to playing football. When Eric Ciebien-McClenning was born, doctors noticed that his left leg was shorter than his right. He was referred to Sheffield Children’s Hospital, where specialists found his left femur was not growing at the same rate as his right. They monitored his condition but could not predict how severe the difference would become. “They told us to wait and see how big the discrepancy will be, maybe it would be able to catch up,” says mum Betty Ciebien. As his condition became clearer, Eric was diagnosed with Proximal Femoral Focal Deficiency (PFFD), a rare condition affecting the development of the upper leg. At the age of three, he underwent a Van Nes rotationplasty, a major procedure in which the lower leg is rotated 180 degrees so the ankle can function as a knee joint with a prosthetic limb. The operation was the beginning of a childhood shaped by hospital appointments, physiotherapy, rehabilitation and learning to adapt to life with a prosthetic leg. Although the surgery was successful, doctors warned Betty that Eric’s leg could gradually rotate back as he grew, meaning he would likely need further surgery. She was also offered the option of having his left foot removed but declined. “When you've got a healthy foot, you just don't want to remove it, because then you could never put it back again,” she says. “And there might be a chance that something could be done in the future.” Betty describes Eric, now 14, as a “very positive person” who has always loved sport and socialising with other kids. “He loves his sport, he loves football, basketball, any sport really, table tennis, just playing with friends,” she says. Eric even played for a local football team, and says his prosthetic allowed him to stay active. “It’s been challenging because you get people looking at you, however once you know people, you get more comfortable because people know you, for example in school,” he says. “Also, I still did have fun playing sports and managing to play alongside people with no disabilities and still managing to play on the same level.” As he got older, however, his leg gradually rotated back towards its natural position, putting pressure on his prosthetic and causing it to break repeatedly. “At this point, whatever sport he was doing, his prosthetic leg kept breaking,” Betty says. “So we kept getting it fixed at the hospital. However, we just couldn't keep up with fixing the leg, so for that reason, they advised that maybe we should think about another operation.” Despite hoping to delay surgery until after his GCSEs, Eric underwent a second operation earlier this year to rotate the leg back into the correct position. While the surgery was successful, the NHS has since been unable to provide him with a prosthetic that fits properly. He was initially told he would need crutches until April or May before being fitted with a new prosthetic, but as of July he’s still waiting. “It’s been hard since I really want to get back to sports,” he says. “Also, it’s been frustrating since I could be running by now, but I can’t since I don’t have the right prosthetic leg. “Again, it’s been hard to wait such a long time, and I thought my surgery would fix the problem of fitting the right prosthetic, but it doesn’t really seem like that.” The time spent waiting has also affected Eric’s confidence and self-esteem. Unable to be as active as he once was and still relying on crutches, he now spends much of his time at home on his computer rather than taking part in the sports and activities he loves. “It's frustrating because when you watch your child, and he's just heartbroken and you want to do so much for him,” Betty says. “I just don’t know what to do, and he's so upset about it and he’s just kind of giving up.” “As a parent, I would do anything. I would give him my leg if I could.” Eric says he misses the everyday activities many take for granted. “I miss playing sports, playing sports with my friends and just generally being outside and simple activities, for example walking,” Eric says. “The sport I miss the most is probably football.” Because of the complexity of Eric’s case, the NHS has so far been unable to provide a prosthetic that meets his needs and can grow with him. The family are now seeking specialist private treatment with ProActive Prosthetics, which has extensive experience in complex limb differences. They have launched a fundraiser after receiving a quote of £14,450 to cover specialist assessments, prosthetic fittings, components, physiotherapy and rehabilitation. Betty adds that being able to get specialist support for Eric would mean the world to their family. “It gives a hope for him to be active again and do what he wants best, go out and enjoy his life,” she says. “We're fighting for something or somebody that can make his life easier and happier.” Eric, who excels in science and maths, hopes to pursue a career in engineering, ideally in the motorsport industry. When he finally receives a suitable prosthetic, Eric is looking forward to getting back outdoors with his family and friends. “I would be outside a lot more going on walks a lot, if that’s with my friends or with my mum, and that would allow me to strengthen my leg to get back to running quicker,” he says. “Once I get running, I would play a lot of football with my friends.” You can find the GoFundMe page here: https://www.gofundme.com/f/help-eric-walk-again-with-a-new-prosthetic-leg
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PersonInImage: Eric Ciebien-McClenning needs a prosthetic to help him remain active