Ashton’s Story – written by her Mum
My daughter Ashton was diagnosed in September of 2004. Her vision is currently in the 20/150 to 20/200 range.
We went to The National Eye Institute at The National Institute of Health in Bethesda, Maryland in November. She was seen by Dr. Rafael Caruso. He had her undergo extensive testing as well as a genetic work-up (we have no known history of this disease on either side of our family tree). There are currently a few trials going on at NIH regarding Stargardt’s that look promising. He also told us that when you get the disease at such a young age (Ashton is 9) the down side is obviously you are losing vision at such a young age, but the upside is that it tends to deteriorate for about the first year after diagnosis and then levels off and doesn’t get much worse after that. I hope we find this to be true in her case.
Ashton wears +150 glasses (non-perscription) for close reading and does really well. She has been and continues to be, a straight A student. I would love to hear from anyone out there dealing with this disease at such a young age—-especially the recessive form of the disease——meaning no one else in the family has it.
Update – January 2nd, 2006
Ashton went back to the National Eye Institute in November of 2005. Everything remains the same with her exam, which is a blessing. She continues to do very well in school, and she even played 5th and 6th grade basketball this year and did quite well. The Doctor we see at NEI told us about a clinical trial that is going on right now that is using contact lenses or glasses to help the retina process the extra build up of protein, so that sounds very promising. Let’s keep our fingers crossed!!