advertisement

Genetics

Updated 29 July 2019

Cape Town girl born without bones in her legs won’t let anything stop her

Because of her condition, Zayaan is unable to walk and move around like a normal kid.

She’s just as restless as any other two-year-old, climbing up the wooden stairs to glide down the bright orange slide in kiddies’ play area.

And don’t think two-year-old Zayaan Oostendorp is going to accept any help while doing so – this courageous toddler is determined to be as independent as possible, regardless of her disability.

“Once she’s decided she’s going to do something, it’s very difficult to change her mind,” says her mother, Lemeza, from Mitchell’s Plain, Cape Town.

Zayaan was born with Langer mesomelic dysplasia, which is an absence of bone growth. When this happens in the legs, it’s called bilateral fibular hemimelia. This means she has no bones in her legs.

Because of her condition, Zayaan is unable to walk and move around like a normal kid but, Lemeza says, the toddler doesn’t let this stop her.

“She’s innovative in the ways she gets around, despite her disability. Nothing stops this baby girl. Sometimes I am in awe of her capabilities. She knows no different, so she makes do with what she was blessed with. She’s always happy.”

Lemeza, who works for RCS, suffers from polycystic ovary syndrome and was warned by her gynaecologist that the pregnancy would be high-risk.

After routine foetal scans showed worrying results, Lemeza and her husband Shafiek were referred to The Fetal Assessment Centre in Claremont, Cape Town.

“Other moms were in and out of the examination rooms in no time, but I was still being examined after 45 minutes,” Lemeza says.

She says the specialist had one look at the scan before blurting out that there “definitely is something wrong with this baby”.

“I was devastated,” she says. “I was emotional, confused and stressed. We didn’t understand what was going on.”

The couple had a follow-up appointment and were told their unborn baby suffers from Roberts syndrome, a rare genetic disorder that is caused by the disruption of cell division. It leads to the malformation of bones in the skull, face, arms and legs.

“Their only recommendation was to terminate the pregnancy. They predicted she wouldn’t make it safely to delivery.”

But she and Shafiek decided to keep their baby and on 18 November 2016 they welcomed their beautiful little girl.

Zayaan was born a healthy baby but her legs were deformed. She was sent for several tests before being referred to an orthopaedic surgeon at The Red Cross War Memorial Children’s Hospital in Cape Town.

There, she was diagnosed with Langer mesomelic dysplasia.

“I was very worried about her future and whether she’d be able to walk or how she’d cope with society and her peers. There were so many things going through my mind,” Lemeza, who’s also the mother of nine-month-old boy Muhammed Raeez, says.

zayaan

Doctors told the couple the only solution would be to amputate her legs and have her use prosthetics.

“I couldn’t accept this feedback, I was very opposed to the doctor’s recommendation,” Lemeza recalls. “I couldn’t even imagine wheeling my daughter into a theatre to cut off those feet without getting a different opinion.”

Lemeza then decided to start looking for doctors around the world who could help. She eventually found Dr Dror Paley, from the Paley Institute in Florida, US. The institute offers the most technologically advanced limb lengthening and deformity-correction treatments in the world.

Dr Paley and Lemeza communicated via email. She told him of Zayaan’s condition and sent him X-rays of the toddler’s legs. Within two days he gave her the exact diagnosis of her legs and his recommendations, which didn’t include amputation.

“He said he can successfully reconstruct her ankles, which will allow her to walk,” Lemeza says.

The family are now doing everything they can to raise R2.1 million to travel to the United States for the surgeries.

So far, they have raised R30 000 through hosting functions, food stalls, cake sales and donations.

“We’ve also started a Back-a-Buddy campaign, where for every R20 pledged, one of the members from our Zayaan Charity Centre will walk 1km.”

The Zayaan Charity Centre was started to create awareness around the condition and fund surgeries for other kids like Zayaan.

Until they’ve raised enough money for the surgeries, Lemeza says she and Shafiek are fortunate to rely on their family, friends and faith in God.

“Believing in our faith and the power of duah (prayer) and trusting that Allah wouldn’t place a burden bigger than we can carry, has carried us through the journey,” she says.

Image credit: Supplied/Facebook