aden r.
Hi. I’m Aden and I was born with a birthmark on half of my
face. (I don’t really notice it now because I have laser treatments
once or twice a year.) When I was 2 months old my parents
found out that I had glaucoma. Then, I was diagnosed with
Sturge-Weber. I’ve been on eye drops ever since.
I had my first eye surgery at 4 months to place an Ahmed
valve in my affected eye. (I had a second one placed in the
same eye when I was 5.) The next day while at the glaucoma
specialist’s office I had my first seizure. Luckily, we were at Jules
“I’m 15 now and enjoying life. I have a
great family who are fun to be with.”
Stein Eye Institute, which is right across the street from UCLA Hospital. My parents
still remember how scared they were running across the street while I was seizing in
their arms.
Since then I have been on seizure medication. At that point I was seeing five
doctors:
• A pediatrician
• A pediatric neuro-ophthalmologist
• A glaucoma specialist
• A dermatologist
• A neurologist
When I was 7 a CAT scan showed that my retina had detached. Now I see
a retina specialist too. I can’t see out of my left eye and don’t have good depth
perception but I have better than 20/20 vision in my right eye. I take three medicines
and an eye drop twice a day.
I’m 15 now and enjoying life. I have a great family who are fun to be with. My
mom and dad, my brother and sister, and my grandparents all encourage me to do
anything I want to do. And we are really lucky to have The Sturge-Weber Foundation to
help with my medical issues and to just lean on sometimes.
I enjoy school and playing strategy type games. I like to read all kinds of different
books. I especially liked the Harry Potter series and the Lightning Thief series. I also
like golf. To me golf is a game of fun, patience and practice. I’m on the school golf
team this year and practice is just starting up.
Stories of Hope
Thanks for reading about my life…so far.
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