The parents of a two-year-old girl diagnosed with a congenital bone defect similar to that of former Olympian Oscar Pistorius, refuse to accept that their daughter will need to have both her lower legs amputated.
Parents Lemeza du Toit-Oostendorp, 33, and Shafiek Oostendorp, 32, from Colorado Park, will do anything to help their baby girl Zayaan, who needs between R2.1 million and R2.8 million for treatment at the Paley Institute in West Palm Beach, Florida, in America.
The funds will only be for Zayaan’s operation. She might need to go for about three or four operations, but they will only know for certain once they have seen Dr Dror Paley and his team.
“When I was pregnant with Zayaan the doctors told us to abort her as they thought she had Roberts syndrome, a genetic disorder characterised by fibular hemimelia, missing femurs, missing arm bones and facial abnormalities.
“We believe in God and had Zayaan. She was born a healthy baby on November 18, 2016 with bilateral fibular hemimelia without Roberts syndrome. The predictions didn’t hold true and
her condition wasn’t fatal,” said Ms Du Toit-Oostendorp. The couple say the correct diagnosis was never made by the local doctors.
Zayaan saw an orthopaedic surgeon privately. At the same time, she was referred to Red Cross War Memorial Children’s Hospital’s genetic clinic by a paediatrician at Cape Town Mediclinic.
The same orthopaedic surgeon also works at Red Cross and Zayaan currently still sees the orthopaedic surgeon there.
Zayaan had a consultation with her orthopaedic surgeon from Red Cross along with 10 other doctors to discuss how best to help her. Ms Du Toit-Oostendorp said their diagnosis was to have Zayaan’s legs amputated.
Fibular hemimelia is a birth defect where part or all of the fibular bone is missing, as well as associated limb length discrepancy, foot deformities, and knee deformities. Bilateral fibular hemimelia (FH) (affecting both legs) is a very rare disorder, occurring in only 1 in 250 000 births.
“My concern is, as she gets older, she would need to carry her own weight which could affect her legs. I will do anything to help my daughter. She is important to us,” said Mr Oostendorp.
“I get a little emotional when I see Zayaan can’t participate in certain activities. Her cousins were playing musical chairs and she eagerly wanted to join in. Friends and family go the extra mile to involve Zayaan in any activities,” said Ms Du Toit-Oostendorp.
The Oostendorps did an online research and figured out their child was born with bilateral fibular hemimelia. They read that in the US, a surgeon named Dr Dror Paley, had developed an operation called the SUPERankle procedure to reconstruct the leg and foot and avoid amputation with prosthetic fitting.
Explaining the operation to the Plainsman, Dr Paley said with the SUPERankle operation Zayaan’s severe foot deformities would be fully corrected and her shortened bones lengthened using a special device called an external fixator.
He said when this operation is done her feet will be 90 degrees to the ground and she will be able to walk, run, jump and play sports like other children her age.
Dr Paley is also the founder and former director of the Rubin Institute for Advanced Orthopedics, and was the director of the International Center for Limb Lengthening (ICLL) at Sinai Hospital of Baltimore from 2001 to 2009.
He was the chief of Pediatric Orthopedics at the University of Maryland in Baltimore from 1987 to 2001. He is internationally recognised for his expertise in limb lengthening and reconstruction.
Zayaan’s family have currently raised R50 000, and have spent their time selling fast food and treats from home and at events, going to car shows to set up a stall to sell treats and are constantly on the lookout on social media for events they can sell their goods at.
Her parents are grateful to everyone who has donated and partnered with them to make Zayaan’s operation possible, including The BMW Owners society.
If you would like to donate to the fund-raising effort for Zayaan, log on to their Facebook page, Miracle Baby Fund, or their website at www.helpzayaancharity.co.za/charity or call Ms Du Toit-Oostendorp at 082 567 5608.