Adorable Marnie Allen-Tomlinson, three, was diagnosed with pseudarthrosis – a condition that leaves her prone to breaking her bones.
She broke her leg at 14 months old and had surgery to fuse the bone back together, but it failed.
Now, her parents Samera Thomlinson, 31, and David Allen, 27, have been told by doctors that the only way for Marnie to live a normal life is if she has her leg amputated.
Marnie also suffers from neurofibromatosis type 1 – a genetic disorder that causes all kinds of issues from tumours growing along her nerves, to bone deformities.
She's set to undergo the surgery next month.
Samera, a health care worker from Derby, said, “It was awful when Marnie broke her leg and ever since she has had to wear a split to support her leg.
“The stares from strangers are heart-breaking. People assume we’ve hurt her.
“And now because of the bone fusion, the plaster cast that stunted her growth so one leg is shorter than her other. Her condition means it could easily break again.
“She could have her bones fused five more times, but the chance of success is only 20 per cent.
“It’s not easy to make such a big decision for her, but in my opinion, the odds aren’t high enough, with the hospital stays and the pain she’ll have to through.
“Doctors think she may have a tumour in her right shin, and we’ve an MRI booked to confirm it.
“She’s got enough to deal with and we don’t want to put Marnie through a vicious cycle of operations and pain.
“I don’t want her deprived of her childhood so I have decided to have her left leg amputated.”
Marnie was diagnosed with neurofibromatosis type 1 in June, 2015, after birthmarks began to develop on her leg.
Samera said: “Neurofibromatosis is like a tree. There are so many branches coming from it. Bone deformities, epilepsy, and small birthmarks, just to name a few.
“The birthmarks were the first thing we noticed. They usually appear under the arm or near the groin, but Marnie had them on her leg.
“Her leg was bent at birth, and we thought it was because of the way she’d been lying in my tummy.
“The doctors thought it would correct with physio but by the time she was 13 weeks old Marnie was diagnosed with neurofibromatosis.
“I went numb. I’d gone with my mum and it was clear I wasn’t taking in what the doctor was saying.
“I did the worse thing possible when I got home, and googled it. It took a while but I reached out to a charity and got the information I needed that way."
Dr Carly Jim, Department of Psychology at Manchester Metropolitan University and Trustee at the Childhood Tumour Trust said: "Neurofibromatosis type 1 is a condition that causes tumours to grow on nerve endings – as well as a series of other complications of which pseudoarthrosis, like Marnie has affects around 10 per cent of children with NF1.
"Whilst the thought of amputating your child's leg is initially shocking we hear so many success stories of children thriving after amputation as they are no longer held back."
Marie is set to have her leg amputated on 11 October at the Royal National Orthopaedic Hospital.
But despite the surgery being only around the corner, the reality is yet to sink in for Marnie's mum.
“We’ve got to get her there for 7am and drive down to London the night before. That’s when it’ll hit us," she said.
“We had the full support of our family and friends. Even the London surgeon agreed it was the best decision.
“It doesn’t make it any easier to know she has to go through it all, but we weighed up the pros and cons.
“The operation she had was horrendous the last time she had her bone fused and we can’t put her through it again.
“This way, she won’t have to mentally deal with the amputation when she’s fifteen or sixteen. She can adapt to it while she’s still a child.”
It's currently neurofibromatosis awareness month, and Marnie's family are fundraising for Childhood Tumour Trust – a charity which has helped them meet others living with the condition.
To donate or find out more, click here.
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