Gloria Ondieki, 27, has been through hell and back.
At the tender age of five, when she just started schooling, she discovered she had eyesight issues. She could not read anything metres away and when night fell, she could literally not see.
For more than 20 years, she lived with the problems, without knowing the root cause.
“I had night blindness and so the journey started on finding out why. Doctors kept telling my parents they could not figure out why I could not see but I needed to put on spectacles.
“My parents, being African, took their time to accept that. But I was put on specs for the first time when I was nine and ever since it’s all I have known,” she narrates.
She had to put up with children mocking her for wearing specs while she was just a little girl. In fact, she was the only small girl with specs in the school.
In 2020, during Covid-19, her condition deteriorated.
“For the first time, I registered the highest lens I’ve ever had and it went up by -2. Even a -1 is very powerful, for people who understand lenses. So my optician, who was running out of options, raised eyebrows,” Ondieki says.
The journey to ophthalmologists in Mombasa, where she lived, started, but with a stern warning from her optician against entertaining anyone who would suggest surgery.
“He did not believe my condition required surgery,” Ondieki says.
She was referred to hospitals in Nairobi and very many tests later, she was finally diagnosed with a genetic retina dystrophy called bilateral myopic foveoschisis in September 2022.
Myopic foveoschisis is a relatively rare sickness that manifests in patients with pathological myopia.
The schisis, or break, in the layers of the retina, occurs because of the increase in the size of the eyeball and a consequent stretching in the layers of the choroid and the retina.
No external factors propagating the condition were found.
“That was the end of the road, they told me. They could not treat anything genetic in the country and I had to sick treatment abroad. I was devastated,” Ondieki says.
The condition is extremely rare, especially among females.
It mostly manifests in males, so much so that even doctors from the UK and the US, who she contacted online, were astonished that a female had that condition.
“So, it was hard for any of the Kenyan doctors and their counterparts in the US and UK to get a direct referral for me.”
She was slowly going blind and as the reality hit her gradually, she began searching for sites where she could get more information about blindness and how to survive with it.
She found a foundation fighting blindness online and she signed up, hoping to get more information about blindness and success stories from victims.
A doctor from the UK who she was referred to contacted her through email and asked for her medical records.
She had three options: one in the UK and two in the US, where she could undergo clinical trials, and for her, it would be the first ever because she is a female with the condition that manifests in males mostly.
For her, the UK option was out of the question because it was way too expensive.
One option in the US, charged $3,500 (approximately Sh471,774) just for consultation.
The other US option charged $10,000 (about Sh1.3 million) for consultation and part of the initial tests.
After a chat with six of the 12 retina specialists in Kenya, she chose the Massachusetts Eye and Ear Hospital in Boston, US, which appeared more economical.
The treatment, she was told, will only slow the condition down or stop it where it has reached so far.
It has already claimed her right eye, which is now blind, having stopped seeing about three weeks ago.
“Living with something uncertain is so stressful. I am fit for the available treatment, so, when I was told I would be in line for the next clinical trial, I knew I would have to reorganise my life,” the web developer says.
“One thing is certain. I am going blind. The only thing I don’t know is when. So I have to act fast.”
The treatment of her condition is so expensive and can reach up to Sh300 million.
“What I am working towards is evaluation which will go up to Sh3.5 million depending on the amount of tests I will undergo,” Ondieki says.
Gene testing is needed to find out which gene is mutating, causing the condition.
Kenya lacks the capacity to do gene testing at the moment.
It is a miracle she was able to study web design during the Covid-19 pandemic.
She now works remotely for a US company, a role that has helped slow down the condition since she rarely moves much.
The news of her diagnosis devastated her and she was in denial for about four months, not mentioning it to anyone. She eventually told her family before letting her friends know.
“All the while I was searching for solutions to my condition on my own, I was convinced I will find a solution and I will not go blind,” she says.
Ever since the diagnosis, she has been in and out of hospital, draining whatever savings she had.
Her friends started an online fundraiser to try and get her to the US, but then some of her relatives did not believe she was actually sick and accused her of lying about it and directed her to stop it.
“I was hurt. These are the same people who saw me wearing spectacles from the age of nine. They are the ones who see me struggle with night blindness every day,” she says.
The crazy part about genetic conditions is that people do not look sick, she says.
That is what made some of her relatives doubt her.
“I do not look sick. You would not know that my right eye cannot see because I seem normal. And that is the hard part, trying to convince someone that I am sick,” she says.
Two of her friends, seeing her condition, wanted to take advantage of her situation to try and sleep with her in exchange for help.
“One wanted me to actually marry him so he can connect me with some organisation that could sponsor my treatment. I felt hurt and dehumanised,” Ondieki says.
“The other always invited me for discussion about my condition and where help will come from only to notice he would be interested in other topics other than my condition whenever we met.”
Until one time she felt tired and frustrated, looked him in the eye and asked him what he really wanted.
“He straight up told me he wanted to sleep with me before he could help me,” she says.
She woke up and left him in the restaurant they were in, took a cab home and cried herself to sleep.
She is currently seeking funds to travel to the US, where she can have a chance at life with no blindness, but says she cannot do it alone and has to get help.
