Three-year-old Moegamat Keyaan Omar was recently diagnosed with a rare medical condition. Optical Nerve Hypoplasia (ONH) is commonly found in young babies. It is a rare condition without a proper cure as cases differ.
The condition of ONH essentially leaves most children close to completely blind or in some instances fully blind. Warren Neal Pillay, a neurophysiologist, shared what ONH is and how it affects the human body.
“ONH is the underdevelopment (in simpler terms) of the optic nerves of the eyes. The optic nerves sit behind the retina of the eye and take in the information that is sent to the brain via the optic chiasm for interpretation, to give vision. In ONH these nerves are underdeveloped, hence you won’t be able to interpret and see images correctly, but this is dependent on how many nerve fibres are damaged. Some will be blind, some [with] mild vison and for some no light will be seen.”
Moegamat currently exhibits no light perception, making it difficult for them to confirm if he can see anything as he needs to speak to them. Zeenat Omar, Moegamat’s mother, shared that they realised something was amiss just before Moegamat’s seven-month check-up when he did not display any of the normal milestones. While the journey has been challenging Moegamat’s parents will do anything for his well-being.
“We had to see different doctors obviously, mainly the ophthalmologists to confirm the condition. We had about four of them for second opinions to make sure the condition is there and that there was nothing else we needed to do. There was a lot of blood work and a lot of MRI scans just to confirm there’s no other underlying issues.”
Underlying issues
Moegamat was not only diagnosed with the rare condition of ONH, but also autism, epilepsy, and lack of growth hormones. For the Omar family and others financing is difficult. Accompanying issues of ONH differ amongst each affected person. In some cases patients deal with other issues such as diabetes. Pillay explained symptoms are treated according to each patient.
Treating the rare condition
Whilst there isn’t a cure or specific medical treatment for the condition, there are ways to treat symptoms. Each person faces different accompanying issues which are treated individually. Treating each condition in isolation, will improve the standard of living. Omar revealed that Moegamat attends a special school which helps him get the stimulation his mind requires. There are assisting tools such as wheelchairs, guide dogs, and medication that aid in treatment.
The journey of dealing with the rare condition of ONH can be tiresome and difficult. With the resources involved in managing it, it is imperative that South Africans are aware and contribute to the cause in any way possible. Julie Allie spoke to Zeenat Omar about raising awareness about ONH.
