Updated 12 October 2018

Parents of 2-year old born with tibial hemimelia determined to see daughter 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 the base of her belly.

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 the base of 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 has 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 one 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 a fibula in either leg – but Phenyo’s parents believe their child has a chance. Amputation has been recommended to them, but they won’t hear of it yet. Not while there’s still some hope. The couple spent hours researching their child’s condition online and Gillian came across the story of a little boy in the United Kingdom who had a similar condition and was successfully operated on and can now walk.

“I found the mother on Facebook and made contact with her. 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.”

The couple have made contact with a doctor at the institute who believes he can help their daughter. But they would have to cover the cost – around $70 000 (over R923 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. G ILLIAN, who gave up her job as a store buyer to become a stay-at-home mom after Phenyo was born, becomes emotional when she remembers how guilty she felt after her daughter’s birth. There was nothing in her pregnancy to suggest the baby might have a problem and she and Tshepo were looking forward to welcoming a baby girl into their tight-knit family – a sister for their son, Koketso (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 foetus, 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 knew there was a problem with Phenyo’s leg when he did a scan when she was 25 weeks pregnant.

“But he chose not to disclose it because he didn’t want to stress me. I wish he had told me – we could’ve started seeking treatment options earlier.” She’s decided to let it go though and concentrate on her daughter. She and Tshepo, a metallurgist, bring their little girl to the Life Baby spa in Fourways weekly for swimming lessons and massages with therapists to strengthen her legs. If she does go for surgery, it would involve lengthening the tibia with titanium then fusing it to the existing bone. Extensive surgery will also need to be carried out on her foot to align it. All this has taken its toll on Phenyo’s older brother, Gillian says. Koketso understands his sister’s situation but battles sometimes as so much attention is 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 a lot 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. T HE couple have raised almost half the money needed to get Phenyo to America and pay for the surgery. They ’ve hosted a number of fundraising initiatives, from starting a Facebook page to having comedy events and a charity dinner, 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 (over 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 (over R923 000),” Tshepo says.

“We’ve raised over 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 is 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.




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