“Stargardt disease is the most common form of inherited juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.”
- Quoted from Foundation Fighting Blindness
On July 6th 2011, this was the diagnosis that Hope received. Just 4 days after her 16th birthday, Craig and I watched as Hope heard the words that crushed her. She would never drive, would never join the military, would never….would never….would never. We watched as she silently cried with a look of disbelief on her face. We watched as she heard that genetic counseling was recommended to determine the risk to the children that she hasn’t had yet.
There is no treatment. No Cure. Her status is that she is legally blind.
We are heading to Stanford University Eye Institute in October. The doctors have recommended that we “Get Her in the System”. This way she will be on a list and be eligible for test treatments and trial studies.
Hope is an amazingly stubborn girl…We are praying that this will continue as she seeks out what her future holds. I could only dream of having her courage and determination.
