Parents turn to online groups to clothe kids with amputations

Kaila Vella turned to the community for help modifying her son's clothes to suit his disability. (ABC News: Marcus Stimson) Link copiedShareShare articleKaila Vella prepared for the worst within weeks of giving birth to her first child last year. The Western Sydney mum gave birth to Braxton at just 25 weeks, when he weighed 670 grams. "He was missing half of his right leg," she said. "It turned out that he had an amniotic band amputation." When Braxton was in the womb, an amniotic band, or a loose piece of tissue within the uterus, wrapped around his leg, cutting off circulation and stunting growth. Braxton was born at just 25 weeks old. (Supplied: Kaila Vella) Support organisation Limbs 4 Kids estimates approximately 2,500 Australian children live with an acquired or congenital amputation, otherwise known as a limb difference. "Because he was only literally the size of my hand, they couldn't pick anything up like that on a scan," she said. "We knew there was a difference in his right leg in length … I thought that he was just going to have a shorter right leg." Braxton was born with one amputated leg. (Supplied: Kaila Vella) Amid a series of tumultuous health setbacks, Braxton spent 147 days in the neonatal intensive care unit, while Ms Vella visited and researched his condition. Ms Vella said when Braxton came home about 21 weeks after his birth, she had no specialised support. "I literally got sent out of the hospital with my baby just like everyone else." She said trying to find clothing for him made things more stressful. Ms Vella says she struggled to find clothing that suited Braxton's body type. (ABC News: Marcus Stimson) "I was trying to find things that they had available for children with amputated legs or, just different walkers or clothing," she said. Ms Vella bought a sewing machine and tried to learn how to alter clothes, but realised she was "ruining" them. She posted in a local Facebook group and was put in touch with Barbara Vasilescu, who had spent about three decades making adaptive clothing for people with disabilities. "She measured Braxton's legs up, both of them, to see the difference in what she'd have to take off the right side," she said. Ms Vella provides the unaltered clothes to Ms Vasilescu who then modifies the garments. (ABC News: Marcus Stimson) When Ms Vella picked up the altered clothes, she "poured her eyes out". "She made them look like I just went to the shop and bought them," Ms Vella said. "I'm very, very, very thankful to have somebody that is able to give my boy the chance to be like every other child." She said inclusive sewing classes and more clothing options for children living with amputations would have helped her. Ms Vella says she cried when she saw the expertly modified Wiggles outfit. (Supplied: Kaila Vella) Ms Vasilescu studied fashion in the late 70s, including tailoring and garment assembly. In 1997, she joined what is now known as the Cerebral Palsy Alliance, making adaptive clothing and accessories prescribed by occupational therapists. "If I make a hand splint that can enable a little one, especially, to pick up a crayon and draw on the walls, my job is done because it's every little one's rite of passage," she said. Ms Vasilescu says a child should always come first, and their disability second. (ABC News: Marcus Stimson) The 68-year-old's motto is "child first, disability second". She now takes requests for clothing modifications from health workers and the public. Ms Vasilescu said it took three hours to modify each pair of Braxton's pants, which involved removing the hems, shortening the length and tapering the sides. "Look, it's a really small niche within the garment industry and I think the ones that do know something like me, we're just getting on a bit, so a lot of that knowledge is not going to be passed on," she said. "People can always learn more, but where do you go?" Braxton now has clothing options that are tailored to his limb difference. (ABC News: Marcus Stimson) Rockhampton-based Karina McCosker is on the board of management for Aussie Hands, a charity that provides people with hand differences and their families with support. Ms McCosker's seven-year-old son was born with his right arm ending just below his elbow. According to the Murdoch Children's Research Institute, up to 30 children in every 10,000 births have congenital hand differences. Ms McCosker alters her son's clothing to meet his needs. (Supplied: Karina McCosker) "From an early age when he was crawling, I started altering his clothes because there was nothing on the market," Ms McCosker said. She said suitable clothing stopped children from "feeling more different than they already are". Research also shows children with limb differences are happier and more confident in clothes that suit their body. A Canadian review published late last year in the peer-reviewed Disability and Rehabilitation journal gathered existing interna

Parents turn to online groups to clothe kids with amputations

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Parents turn to online groups to clothe kids with amputations

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