Lisa’s Story – about her son

My son is 8 years old and diagnosed with Stargardt’s just recently. He was 5 years old when we first noticed his vision loss. He has been to 10 doctors and through several tests. I have read several stories of the people who have Stargardts and I have no idea what it is like to have a vision problem, but I can tell you from a mother’s perspective it is heartbreaking and sad to see my son struggle in school and in everyday activities that most people take for granted. I had a hard time with it at first especially reading with him. I went through denial and sadness and all the emotions in between. I would break down and cry when I saw him struggle. I have finally got to the point that I can help him as much as I can. He has all the equipment I can get him to make his life easier. He even has a CCTV and large print books at school. The teacher and staff are very understanding and a wonderful group of people.

We finally found a doctor in Houston Texas. The man who was involved in the isolation of the gene that causes Stargardts, Dr. Lewis. He is heaven-sent for people with Stargardts. He is really working hard towards a cure. He has asked my son to participate in some research to make a microchip to diagnose the disease. I just want everyone to know that there are people out there that are looking for a cure. And believe me I pray for one every day. Don’t lose hope.

My e-mail is: lisab3@prodigy.net.

Lisa
Corpus Christi, Texas