Joe’s Story – written by his mum, Avelina

Hi, my name is Avelina Garcia, my son Joe Quintana was diagnosed with Stargardts disease just a few weeks ago. He is 9 years old and in the third grade. As his mom, I was devastated. It all started at the beginning of his second grade school year, when he had his vision checked by the school nurse, and failed. I then took him to an optometrist and was given glasses. He wore them everyday all the time. After a couple of months of regular wear, he told me the glasses still weren’t helping. So I took him to a different optometrist. I gave him his previous prescription, which he said was correct. Joe was just told to wear the glasses everyday, and to only take them off when taking a shower or sleeping, which he was doing anyway. I continued to have him wear them as he was told by the doctor. A couple more months went by and he started complaining that his vision was getting worse. I knew he wasn’t lying, because it started to show in his school work. So I took him to a third optometrist, who seemed to just get annoyed because Joe was giving conflicting results on various tests. We were sent home again, with no answers. I then made an appointment with his pediatrician Dr. Crocetti, who ran extensive tests to rule out anything else that could be contributing to his vision loss. Everything came back normal so Dr Crocetti referred Joe to a pediatric opthamalogist, Dr. Goldblum. He was just wonderful. The first look he took of Joe’s eyes, he knew something was wrong but wanted Joe to see a retina specialist, Dr. Aragon. Dr. Aragon took a look at Joe’s eyes and said he saw clouding at the very back of the eye. He scheduled an “ink dye” test to be sure. That very day he was diagnosed with Stargardts. It has been a very stressful few weeks for me. I am working with his school to figure out ways to help him with the vision that he still has. His teacher has very high expectations of Joe. I think that is what motivates him to do his best every day. His teacher wants to see him fullfill his life goal, which is to attend Harvard and find a cure for cancer. At 9 years old that is a huge goal, and as his mother I feel he can do it with the help of myself and everyone including the school staff, nurse, and his teacher.

I really would like any and all information from people going through this because all this is very new and difficult for me to deal with. I appreciate all the letters. It has put this disease into a whole new perspective for me.

Good luck to everyone.

Avelina
E-mail me at: amg_jquintana@yahoo.com