Cape Town - A Johannesburg family are desperately trying to raise funds to accommodate their son who was diagnosed with optic nerve hypoplasia (ONH) at seven months old.
ONH is a congenital disorder characterised by underdevelopment (hypoplasia) of the optic nerves. The optic nerves transmit impulses from the nerve-rich membranes lining the retina of the eye to the brain.
Zeenat Moosa, 23 and her husband Kaashif, 30, from Florida, are trying to raise R300 000 for their 2-year-old son, Keyaan.
Speaking to IOL, Zeenat said they noticed something was wrong when Keyaan did not react to bright lights and his eyes were not steady.
“Keyaan was born at 37 weeks due to no oxygen. He was placed in ICU.
“As time went by and it came to his seven-month check-up, I mentioned to the doctor that he was behind in reaching his milestones.
“She referred us to another doctor and he immediately said Keyaan is blind.
“We got a second opinion and that doctor confirmed he had ONH,” she said.
Zeenat said the doctor said while Keyaan was still young he would be affected by many things and would only be able to tell them once he is older if he could see anything.
“As new parents, this is not something you want to go through. He will not be able to do certain things with us.
“His condition also brings many issues such as growth, speech. He does speak one or two words but he needs speech therapy.
“Keyaan started standing last year, he needs physiotherapy to assist as his lower core and legs are very weak.
“Once that is completed, he’ll have to get occupational therapy,” Zeenat told IOL.
The mother, who also has a three-month-old baby, says doctors in Johannesburg only take cash.
Keyaan has regular doctor visits for multiple check-ups such as blood work, hormones and thyroid, and MRIs.
The family have to fork out between R3 000 and R4 000 a doctor’s visit and have to claim from their medical aid.
Keyaan also attends a special needs school where he receives normal schooling but the school fees are R5 000. The family can only afford to send their child twice a week because they cannot afford it.
The family are trying to raise funds not only for medical care and schooling, but for a walking aid, walking cane and a guide dog.
“The school has a relationship with the company which has the guide dogs, however Keyaan will have to take sessions with the dog, which will be groomed from a puppy stage to assist him. They will grow together, but sessions are R48 000. To own the dog will cost R10 000,” Zeenat explained.
The mother said the costs remained a major hurdle for the family and doctors in South Africa were not too clued up about her son’s condition.
“There is currently a trial for stem cell therapy for ONH in Germany but we can’t afford that. We’re now trying to raise funds just to ensure Keyaan has his basics. This fund-raising is just to kick-start for his needs.
“We are hoping that perhaps in the next five years doctors in South Africa will have gained more knowledge for children with Keyaan’s condition,” Zeenat said.
The family have managed to raise R11 228 on Back-a-Buddy.
If you would like to assist Keyaan, please contact Kaashif on 083 385 9474 or email the family at roomaanmoosa@gmail.com
robin.francke@inl.co.za
IOL