My name is Leslie-Anne Stacey, I'm an elementary school teacher of children with special needs but I'm currently staying at home caring for my 16 month old boy, Ronwanién:te.
I've had problems with my eyes since I was 2 (I'm now 35) in 1999 my optometrist referred me to a retinal specialist who diagnosed me with Stargardt's disease (juvenile macular degeneration) but in 2013 my ocular geneticist discovered through DNA testing that it isn't Stargardts, it is in fact bestrophinopathy (a rare form of macular degeneration). I was also diagnosed with uncontrollable closed angle glaucoma in 2008.
My glaucoma doctor commented on how rare it is for someone as young as I to have this eye disease, which is obvious as I sit in the waiting room. Everyone there is in their 60's and 70's. My vision problems are that of an elderly person which is of great concern considering I'm only 35! My retinal problems cannot be corrected by glasses/contacts or lasik, it's far more complex. Due to the nature of these eye diseases, I must visit my three eye specialists often.
All my life I have had to deal with a disability that not many people may consider a disability. I have had to deal, cope and adapt myself to a way of living that most people take for granted. I'm unable to drive a car, watch a television clearly, and have difficulty read a newspaper or book without magnifiers. Not only have I been able to adapt myself, but at the same time managed to hide my disability from the public for more than 20 years, a feat not easily accomplished.
Up to now I've had 3 unsuccessful laser surgeries for my glaucoma. After each time my doctor lasered an opening in my eye, the opening closed within a few days, which my doctor informs me is quite rare. In 2013 my glaucoma doctor had ordered a 4th surgery, cataract surgery, to "once and for all correct the stubborn glaucoma." According to him, the surgery was successful. My eye pressure averaged between 30-40, now it's between 10-15. This last surgery left me with a cloudy eye, and I still need two different eye drops every day. I'm now legally blind in one eye.
After each eye surgery, I have been left with cloudiness, halos, flashes of light and floaters. My glaucoma doctor is saving my peripheral vision but it's at the cost of my central vision which is compromised after each procedure due to my underlying retinal problems.
My retinal specialist expressed feelings of frustration and is apologetic as he admits he hasn't any answer for me. My only option now is to seek the medical expertise of the doctors at the Wilmer Eye Institute at Johns Hopkins Hospital in Baltimore Maryland.
I already have my file open at Johns Hopkins, and are ready to receive me. My 3 eye doctors, my optometrist and former paediatric ophthalmologist have already graciously faxed my entire files to Johns Hopkins dating back more than twenty five years.
I will need to be seen by a retinal specialist and a glaucoma doctor, so I'm asking for your help to cover the bills incurred by these visits/testing and potential treatments or surgeries. My boy is 16 months now and my dream is to be able to see him grow up, play sports, be able to read to him without the book close to my face with a magnifying glass, to teach him to drive one day, and to lead as normal a life without having to depend so much on everyone around me, but I'm just afraid at the rate things are going it may not be a reality. I am making a heartfelt plea to try and save my vision, I need financial assistance to take care of medical fees in the U.S.- not covered by any Quebec/Canada insurance, and because I see my own doctors often I am anticipating a few visits to Johns Hopkins Hospital. Nia:wenThank you for your support :-)