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
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.”
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.