My name is Maria. I am in desperate need of your help to raise money to save my husband’s eyesight.

My husband is only 30 years old. He is a loving father to our three beautiful children, aged 6, 4, and 2. They are still so young. They still reach for his hand. They still run to him to show him the smallest things. And he is terrified that one day he may not be able to see their faces.

He has a rare genetic eye condition called X-linked retinitis pigmentosa, one of the most severe forms of retinitis pigmentosa. This disease slowly destroys the photoreceptor cells in the eye — the cells that detect light and allow us to see. Once these cells die, they can never come back. The damage is permanent.

Usually, people with this condition begin losing their night vision in their teenage years. Then their peripheral vision narrows, creating tunnel vision. Central vision is often lost much later in life, sometimes in old age.

But for my husband, this process started much earlier.

He cannot even remember ever being able to see at night. As a small child, when it became dark, the other children would continue playing and laughing. He would just stand there, seeing nothing but pitch black, listening to their voices and wondering how they could still see. Even in primary school, his peripheral vision was already affected. He would bump into things, fall over, and think it was normal.

At just 22 years old, he lost the central vision in one of his eyes.

Now he relies completely on his remaining eye — the only eye left with central vision — for everything. And that eye is now being affected too. He is very worried. Every single day, he wakes up and prays, hoping nothing has changed and that the darkness has not crept in any further. And of course, no one wants to lose their eyesight. No one wants to see pitch black. Close your eyes for a moment and imagine your life like this forever. Now reopen them. How blessed and lucky do you feel that you can open your eyes and see again? For someone who has lost their vision, this is it. There is no opening your eyes again. This is their life.

For years, he has been desperately searching for anything that could stop this disease. He has researched, contacted specialists, and tried to get into clinical trials. He knows the vision he has already lost cannot return. He is only trying to save what little sight he still has before the remaining photoreceptors die.

There is now one place offering a new treatment called OCU400 by Ocugen — a modified gene therapy designed to help protect and preserve the remaining photoreceptor cells to slow further vision loss. It is available through an Expanded Access Program for a limited number of patients — a maximum of 75 people. The list is already almost full, and the clinic has told him he has until the end of April to decide and secure his place. If he does not, he will lose his position and may never get this chance again.

My husband truly wants to go ahead with this treatment. But we simply do not have the money.

The cost is $40,000 — $20,000 per eye (around £16,000–£17,000 per eye). We are hoping to at least treat his better eye first, to protect the vision he still relies on.

The past few years have been incredibly difficult. He carries constant fear about the future — about not being able to see our children grow up, about losing his independence, about living in permanent darkness.

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.”

I am humbly asking for your help. Even the smallest donation will make a difference. And if you are not able to donate, please pray for my husband. Please pray for our family.

The treatment is available at:

ERIE Retina Research, Pennsylvania, USA

If anyone would like to speak to my husband or has any further questions, please don’t hesitate to contact us at:

+44 [phone redacted].

We would be forever grateful