A rare genetic eye disease - the most severe forms of Retinitis Pigmentosa
Our brother is only 30 years old. He is a loving father to three young children, aged 6, 4, and 2. They are still so small, still reaching for his hand, still running to him to show him the little things that matter so much. His greatest fear is that one day he may no longer be able to see their faces.
He has a rare genetic eye disease called X-linked retinitis pigmentosa, one of the most severe forms of retinitis pigmentosa. This condition slowly destroys the photoreceptor cells in the retina — the cells responsible for detecting light and making vision possible. Once these cells die, they cannot be restored.
For many people, this disease begins with loss of night vision in the teenage years, followed by narrowing peripheral vision and eventually tunnel vision. Central vision is often lost much later in life.
But for this brother, it progressed much earlier.
He cannot remember ever being able to see properly at night. As a child, when it became dark, other children would continue playing while he stood in complete darkness, unable to understand how they could still see. Even in primary school, his peripheral vision was already affected. He would bump into things, trip, and fall, assuming it was normal.
At just 22 years old, he lost the central vision in one eye.
Now he depends entirely on his remaining eye — the only eye left with central vision. But that eye is now being affected too. Every day he lives with the fear that the darkness may continue to spread. He worries about not being able to watch his children grow up, not being able to remain independent, and facing a future he never imagined.
For years, he has done everything he can to find hope. He has researched treatment options, contacted specialists, and pursued clinical trials. He knows the vision he has already lost cannot come back. He is only trying to save the sight he still has before it is gone forever.
He has now been given a possible chance.
A treatment called OCU400 by Ocugen, a modified gene therapy designed to help preserve remaining photoreceptor cells and slow further vision loss, is being offered through an Expanded Access Program. This program is limited to just 75 patients, and the places are almost full. The clinic has told him he has until the end of April to secure his place. If he cannot, he may lose this opportunity forever.
The treatment is available at:
ERIE Retina Research
Pennsylvania, USA
The total cost is $40,000 — $20,000 per eye. Our hope is to raise enough to treat his better eye first, to protect the vision he still relies on every day.
He is asking for your help in this moment of desperation and hope. Any amount, no matter how small, will bring us closer to protecting his remaining sight. And if you are unable to donate, he is kindly asking for your duas.
The Prophet Muhammad (peace and blessings be upon him) said:
“Whoever relieves a believer’s hardship in this world, Allah will relieve his hardship on the Day of Judgment.”
Please help us give a young father the chance to keep seeing his children for as long as possible.