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.
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.
unable to walk and run like most children her age and instead crawls to get
an interview with YOU last year, Phenyo’s parents, Gillian and Tshepo, revealed
that their daughter can only wear certain styles of clothing.
can’t even put her in dresses because I have to try and protect her knees,”
Gillian (30) said.
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.
their own research, the parents discovered the Paley Institute in Florida,
where Phenyo subsequently received treatment that’s enabled her to take her
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
“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.”