Belfast Telegraph

Family's bid to raise funds to help their baby girl get prosthetic leg

By Rebecca Petticrew

THE parents of an east Belfast toddler who had to have her leg amputated are on a fundraising mission to provide their daughter with the prosthetic legs she will need to live an active life.

Fourteen-month-old Mya Darragh, from St Leonard's Crescent, was born with tibial hemimelia, a rare condition thought to affect approximately one in a million babies.

Undiagnosed before her birth, Mya's parents Nicole Sloan (24) and Graham Darragh (24) were left reeling when doctors told them their newborn daughter had no knee, tibia, ankle or big toe on her right leg.

After several months of tests to establish why Mya's leg had not formed correctly, doctors confirmed it was tibial hemimelia, telling her devastated parents she needed to have the limb removed to give her the best chance of mobility.

"For a month we thought they would be able to correct Mya's problems with physiotherapy and maybe an operation. But when doctors found out exactly what was wrong they knew there was no option other than to amputate it," Nicole explained.

Mya underwent surgery to amputate her right leg at the knee on her first birthday on July 3 this year.

"It was so emotional," Nicole said. "To start with I was really upset that they were going to do the operation on her birthday. But then I started to think that we should celebrate being able to give Mya the chance to get rid of something that was holding her back."

Mya is healing well after her surgery and the process of fitting her with a prosthetic limb will start at the end of this month.

The NHS will provide the toddler with one prosthesis which will allow her to walk, changing it as she grows. Her parents are raising money for specialist artificial limbs which will enable their daughter to take part in any sporting activities she wishes, as well as a "pretty" leg so she can wear whatever she likes without feeling self-conscious.

"Each specialist leg costs between £20,000 and £50,000 and there is no way we could afford to pay for them ourselves. We had no option but to try and fundraise for her," Nicole explained.

The enterprising mum has already set up an online shop selling keepsakes and customising children's dummies.

"I needed to feel like I was doing something to help," she said. "All of the money raised goes towards Mya's fund and it gives me something else to focus on too."

Nicole and Graham's families are also doing as much as they can to raise money. Graham's mother Sandra and brother Chris organised a fundraising night. Nicole's father Barry and brother Reece are completed the 'Lap the Lough' challenge last weekend – an 81 mile cycle around Lough Neagh.

Her sister Kirsty is running the Great North Run half-marathon next month. Graham's colleagues from the Tesco store in Knocknagoney recently donated £300.

"We've been so grateful for everything people have done for Mya. Obviously we want to raise as much money as we can for her but we also want to raise awareness of the condition as well," Nicole said. "It's been a huge shock and we were completely unprepared, but Mya is a complete blessing in every way. She's the happiest, smiliest, loveliest baby and I'm just so proud of her."

To make a donation to Mya's fund, contact Nicole at: www.facebook.com/Little.keep.sakes.5876?fref=ts

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