x Abu Dhabi, UAEFriday 28 July 2017

Abu Dhabi baby's battle against amputation

Jasmine Ammari was diagnosed with a rare condition known as congenital pseudarthrosis of the tibia (CPT) that causes her leg to break. She needs surgery urgently or risk getting her leg amputated.

Jasmine Ammari has a rare condition known as congenital pseudarthrosis of the tibia (CPT). The bone fails to form properly and as a result is prone to fracture.
Jasmine Ammari has a rare condition known as congenital pseudarthrosis of the tibia (CPT). The bone fails to form properly and as a result is prone to fracture.

DUBAI // A family are in a race against time to raise money to pay for surgery needed to save their 18-month-old daughter’s leg.

Jasmine Ammari has a rare condition known as congenital pseudarthrosis of the tibia (CPT). The bone fails to form properly so is prone to fractures.

The diagnosis was made when Jasmine was five days old, and since then her left leg has been encased in either a cast or braces to prevent the tibia from breaking.

Her parents, Jordanian Midhat Ammari and British Kelly Rees-Caldwell, were told last July by a specialist that surgery was needed urgently because her leg could break at any time, and the condition would then become much harder to treat.

The operation went ahead but was unsuccessful – Jasmine’s tibia fractured in September and her leg had to be put in a cast.

Last month, her condition worsened. When her cast was removed, her bone was protruding through her skin. The wound has since healed, but an X-ray on Sunday revealed that both the tibia and fibula were broken.

Major surgery is needed to stabilise her leg and head off the risk of infection, and each day the operation is delayed increases the risk that amputation will be required.

But Jasmine’s family have already run up huge debts paying her medical bills and cannot afford the operation.

“The doctors are worried that the longer we leave it the more likely that the bone is going to come outside again,” Ms Rees-Caldwell said at her home in Abu Dhabi.

“They have told us if she doesn’t have the surgery she will lose the leg. There’s no way that her tibia will heal on its own, the break is much too bad.”

The agony of watching her daughter suffer over the past 18 months has been “unimaginable”.

“When I found out I was pregnant it was the happiest day of my life, and for my husband as well,” she said. “But then to go through all this and see your little girl going through so much pain, it feels like we’ve been on one long roller coaster.

“She’s desperate to walk, she’s now learnt how to stand up on one leg. But that day when I saw her bone outside, I can never forget that.”

There is no orthopaedist specialising in the condition in the UAE, but the couple have found an expert, Dr Dror Paley, in Florida who has treated more than 100 cases.

“He is very confident that if Jasmine goes to him he can heal her leg. Whatever he sees when he opens her up we know that he has the experience to deal with that,” Ms Rees-Caldwell said.

“He’s been able to give us a discount on the surgery and the hospital and everything, but it’s still going to cost about Dh250,000 to get there and have the surgery.”

If Dr Paley can treat Jasmine and she receives further treatment in the coming years, she is likely to develop normally. In most cases CPT ceases to have an effect once the patient stops growing.

Jasmine’s condition is not covered by her family’s health insurance because it is congenital. Ms Rees-Caldwell, 28, and Mr Ammari, 34, a project manager, have run up large debts after spending more than Dh400,000 on medical bills.

The couple are appealing for help through a fundraising website and have made a YouTube video to explain the condition.

“We would always be grateful for support to help us get Jasmine this surgery she needs,” Ms Rees-Caldwell said. “It’s looking like either 2012 is going to end with amputation or 2013 is going to start with a chance of saving her leg, so this would be the greatest gift anyone could ever give us.”

Contributions can be made at http://tinyurl.com/cp4koae

csimpson@thenational.ae