Three-year-old with rare birth defect takes her first steps

It’s been quite a roller-coaster ride since we spoke to the Maropa family last year – and a lot has changed. Three-year-old Phenyo Moropa from Midrand in Johannesburg is bright-eyed and full of energy.

The little girl was born with a rare birth defect called tibial hemimelia Jones type two – which is a deformity resulting from a shortened or absent tibia and relatively unaffected fibula.

She’s unable to walk and run like most children her age and instead crawls to get around. In an interview with YOU last year, Phenyo’s parents, Gillian and Tshepo, revealed that their daughter can only wear certain styles of clothing.

“I can’t even put her in dresses because I have to try and protect her knees,” Gillian (30) said. Despite the couple’s concerted efforts to find treatment for their daughter in South Africa, the only option local specialists offered was amputation – which they weren’t willing to do.

Doing their own research, the parents discovered the Paley Institute in Florida, where Phenyo subsequently received treatment that’s enabled her to take her first steps. 

The Maropas thought it would take them a lifetime to find the money for their daughter’s treatment, but fundraising and financial blessings soon saw them flying to Florida for Phenyo’s surgery.

“Both surgeries went well,” a delighted Gillian reveals. “She was already up and in therapy four days after the first surgery and two weeks after the second surgery.”

Phenyo’s first surgery, lasting two hours, was on 20 September last year.

Surgeons put an external fixator on her leg to stabilise her fibula (the smaller bone in the shin area) and soft tissues.

For the first two months after the surgery, Gillian would turn the six struts on the fixator by 1mm each day – to pull the fibula down to below the knee as it was dislocated and was on the side of the knee.

Once the fibula reached below the knee the second step was to correct the foot.

“For the three months turning the struts to different schedules, we rotated her foot to the correct position.

“When this was done, she had her second surgery on 5 February. It was six hours long,” the mom recalls.

The surgeon cut Phenyo’s fibula adjacent to where the underdeveloped tibia (the larger bone in the shin area) is.

“Unfortunately her femur [thigh bone] cracked when they were checking the knee function, which was too stiff.

“A cast was placed around her thigh. We currently in the consolidation phase of four months to watch her recovery, but her bones are healing well,” Gillian says.

Phenyo, her parents and brother Koketso (10) are back in South Africa and will return to America in June for another operation to remove the fixator and for her to undergo more physical therapy.

Their daughter’s treatment has cost almost R2 million and was worth every cent, Gillian says. The family is elated with the results and excited to see Phenyo walking.

“The results are better than we expected. We’re struggling a bit with her knee exercises but overall she’s walking and very active.”