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Name
Drew Withoft (son of Leslie)
Born
10/21/92
Home
Chelsea, Alabama
Diagnosis
Stargardt's disease.
Acuity
20/400
Eyes Affected
Both eyes.
Eye Color
Very blue
Age at Diagnosis
9
Treatment
Has been to see Dr. Nolan in September. Treatment currently consists of one drop of echothiophate in every other eye, every other day. Improvement in near vision has been seen since starting the ECHO treatment. He is able to see 20/70 at 6 inches. This is with great difficulty, as he has very large scotomas. This means that, while the improvement is there, it has little practical application in his every day activities.
Family History
No history of MD on either side of the family. Devin, Drew's younger brother, has not shown any manifestations of the disease to date.
Impact On My Life
Drew's life has seen many changes. Public school was not able to keep up with his changing visual needs, so he started 5th grade at the Alabama School for the Blind in Talladega, Alabama. He's learning Braille at an unbelievable speed. The school is also providing him with the skills necessary to be self-sufficient in later life. The school is residential, so he is not home during the week. We are in the process of moving closer to the school so he can live at home. He still loves to do many of the things that 11-year-old boys enjoy, like riding his scooter, playing basketball, and playing video games. He does get frustrated when he can't do these things as well as before his vision loss. Overall, he has a very positive attitude, and life is about what can be done, not what can't be done. As his parent, I have recently come to terms with this disease and will do whatever I can to encourage and support his choices in life. I am hopeful that there will be a cure for this disease in his lifetime, and quite possibly in mine. Hope keeps us all going.
Positive Effects
Drew has made amazing adaptations, and it is very difficult to tell that he has a severe visual impairment. He can't see the words on a page or a face across the room, but he has found a way to continue to play soccer. He is learning that things don't come easy, but he is willing to do what it takes to be successful. I see a young man who is overcoming adversity with determination and hard work. These are qualities that will make him a strong, successful adult.
Adaptations
It appears that Braille is going to be Drew's medium of choice. He's now at a level 2, which means he is about six months to a year away from a total transition to Braille. He uses his CCTV on occasion, but because of the large scotomas, it doesn't help that much. He also sits very close to the TV in order to see it. The larger, higher-resolution screens make it easier for him to see the TV.
Employment Situation
Drew hopes to be a scientist when he grows up. I have every reason to believe that this will happen for him.
More About Me
Drew is a very special young man who loves to spend time with his family, especially his younger brother, Devin. He loves sports and has joined the swimming team and wrestling team at his school. Drew has an awesome personality, and he touches everyone who meets him. Everyone who meets him comments on his pleasant disposition and positive attitude. I'm so lucky that he is my son.
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