Rehana Qadir, 27, from Essex shares her story...


Parents will do anything for their children, and I’m no different with my daughter Zahra, 3.

Before she was born, a scan showed that the fibula in her calf bone was missing from her right leg. And, when she arrived in October 2013, she had what looked like a dislocated hip.

As she grew, her right leg seemed shorter than the other – and, over time, the difference became more obvious.

‘We need to get her looked at,’ my husband Zulfiqar, 31, agreed in June 2014, when Zahra was 8 months old.

girl with proximal femoral focal deficiency

But what we were told came as a shock.

‘Zahra has proximal femoral focal deficiency,’ the doctor said. We’d never heard of it, but they explained it was a very rare condition with no known cause.

The ball-and-socket joint in her right leg hadn’t formed properly, her thigh bone was too short, and her hip was deformed. And it would only get worse. Our poor girl.

‘The difference between her leg lengths could be 30cm if left untreated,’ the doctor said. And the condition would also cause her foot to turn out. We were devastated.

‘What can be done?’ I asked. Zahra needed surgery. But, in the meantime, she was fitted with prosthetics.

The operation was in November 2015 at Great Ormond Street Hospital, where a metal plate was inserted into her leg to fix the ball-and-socket joint.

But the surgery didn’t go as planned. Poor Zahra was in excruciating pain because the plate was starting to slice through her bones.

It was soon removed, but my poor little girl was still in agony.

girl with proximal femoral focal deficiency

Zahra’s prosthetics leave her in agony

At first, she was fine with her prosthetics, but, because her foot needed to be vertical to fit inside, it soon became more difficult for her to manage, and now she can only wear one for 10 minutes before it becomes too painful.

Zahra tried her best to keep up with her friends, but it was such a struggle. ‘Why can’t I play?’ she’d ask. ‘Is it because I hurt myself?’ That was how she understood her condition. Heartbreaking.

We’d countless appointments every month, including physio, x-rays, prosthetic fittings and checkups. But, this year, we received more news.

Doctors said the only option was to amputate Zahra’s right foot, so she could wear a prosthetic leg.

‘There has to be another way,’ I insisted.

Researching on Facebook, I discovered a doctor in America with a huge success rate in leg-lengthening surgery. So I contacted his patients, who all praised the results. Even UK doctors knew of him.

girl with proximal femoral focal deficiency and her mum outside the eiffel tower

‘If anyone can help Zahra, he can,’ they said.

The procedure isn’t available on the NHS, and the American doctor has quoted us around £150,000 for the operations needed to correct Zahra’s leg.

I’ve started a GoFundMe page, and we’ve already received over £43,000 in donations in just two months!

The support has been amazing so far, but we still have a long way to go to get Zahra to Florida.

Our daughter’s been through so much already that I refuse to give up until she’s leading a pain-free life.