‘ We just want to see our girl walk’
She was born with a rare birth defect that’s affected her right leg, but little Phenyo’s parents are determined to see her walk one day
AT FIRST glance the little girl looks like any other toddler – happy, engaging and full of energy, scooting across the room as laughter bubbles up from her belly. But there’s one major difference: two-year-old Phenyo Moropa isn’t running around on her chubby little legs but crawling around on her knees.
She was born with a rare condition that’s robbed her of part of her right leg and left her unable to walk.
“I can’t put her in dresses because I have to try to protect her knees,” mom Gillian (29) says.
The past two years have been tough on Gillian and her husband, Tshepo (32), who’ve made it their life’s work to see their daughter walk on her own two feet some day, no matter the cost.
Phenyo was born with a rare birth defect called tibial hemimelia Jones type 2, a deformity that results in a shortened or absent tibia. It’s similar to fibular hemimelia, the condition that caused jailed Paralympian Oscar Pistorius to have his legs amputated below the knee when he was 11 months old. Oscar was born without fibulas in both legs – but Phenyo’s parents believe she has a chance.
Amputation has been recommended to them but they won’t hear of it yet – not while there’s still hope. The couple have spent hours researching their child’s condition online and have been encouraged by the story of a little boy in the United Kingdom with a similar condition who’s had successful surgery and can now walk.
“I found the mother on Facebook and made contact with her,” Gillian says. “She told me the process they went through and where they went – the Paley institute in Florida in America. She gave me all the information about the doctors and so on.”
She and Tshepo have contacted a doctor at the institute who believes he can help Phenyo. But they’d have to cover the bill – about $70 000 (R945 000) – as well as travel costs and accommodation, and have started fundraising to see if they can make their dream a reality.
“We really want to prove to all those other surgeons who said we should amputate that it isn’t our only option,” a determined Tshepo says.
GILLIAN, who gave up her job as a store buyer to become a stay-at-home mom after Phenyo’s birth, becomes emotional when she recalls how guilty she felt after her daughter’s birth.
Nothing in her pregnancy suggested their baby might have a problem and she and Tshepo were looking forward to welcoming a baby girl into their closeknit family – a sister for their son, Koketso (now 11).
But when she saw her baby’s leg she started wondering: did she perhaps do something while she was pregnant to cause the defect?
“I actually had an X-ray done before I knew I was pregnant. Could that have harmed the fetus, I thought? Maybe that was the reason – the radiation. I kept
thinking maybe I didn’t take enough vitamins, and what else could I have done differently?” Doctors have reassured her there was nothing she could’ve done although the couple are considering having tests to see if the condition is genetic. Gillian was stunned when her gynaecologist told her he’d known there was a problem with Phenyo’s leg when he’d done a scan at 25 weeks into her pregnancy. “But he chose not to disclose it because he didn’t want to stress me. “I wish he’d told me – we could’ve started seeking treatment options earlier.” She’s decided to let it go though and to concentrate on her daughter. She and Tshepo, a metallurgist, take their tot to the Life Baby spa in Fourways, Johannesburg, for swimming lessons and massages with therapists to strengthen her legs. If she does have an operation it would involve lengthening the tibia with titanium then fusing it to existing bone. Extensive surgery will also have to be done on her foot to align it. All this has taken a toll on Phenyo’s older brother, Gillian says. Koketso understands his sister’s situation but sometimes battles because so much attention is focused on her. “But he’s also strong – he’s an awesome kid,” Tshepo says.
Gillian and Tshepo just want Phenyo to have a normal life and be able to go to school. Right now they don’t go out much and the little girl doesn’t go to playschool because her mom is too worried about her.
“She won’t be able to keep up with the other kids physically and she could injure herself if she tries. It’s safer for her at home.”
THE couple have raised almost half the money needed to get Phenyo to the USA and pay for the surgery. They’ve hosted several fundraising initiatives, from starting a Facebook page to organising comedy events and a charity lunch, in the hope of making their way to Florida by September.
Sponsors have also been gracious, Gillian says, with individuals and companies coming on board to donate what they can.
“Our first quote for the surgery was $146 000 (more than R1,9 million). But we’ve been in constant communication with the doctors and when they realised how much we were struggling they gave us a partial pro bono fee, bringing it down to $70 000,” Tshepo says.
“We’ve raised more than R350 000. Our main focus is to cover the treatment and we’ll figure out the rest.”
They’re hopeful things will work out as they believe their daughter is destined for greatness and they’re willing to make sure she has the best chance of getting there.
Gillian wants everyone to know she has nothing but admiration for amputees and people who use prosthetics, and if there was no other option for her child she’d gladly embrace it. But she doesn’t believe it’s the only option and knows her daughter can be helped.
“I just want to see her walk,” Tshepo says, looking at Phenyo shuffling around the room. “I want to see her put on her first pair of shoes and be able to keep up with her peers. I want to see her run. And I believe we will one day.” S
‘We want to prove to all those surgeons who said we should amputate that it isn’t our only option ’