Written by his mother and advisory board member, Nancy Payton, about her son Tyler.
“My son Tyler was diagnosed in January 2012 with Coats Disease. Never heard of it? Most people, even physicians, have not. It is an extremely rare, progressive eye disease that leads to vision loss / blindness. There is little to no research being done on this disease because only 75 new cases of Coats are diagnosed per year. Mostly it is diagnosed in males, average age is 6 or under, and it is a disease that affects only one eye.
When Ty was diagnosed, we were told that the only hope we had to save his eye was monthly Avastin (chemo drug) shots in the eye. I read every single piece of information and research that I could find. Let me tell you, there is not much. I somehow stumbled onto a few Facebook groups of families from around the world who share their experience – as they ARE the experts. Through these groups I realized that my son was not being treated the same as other kids around the world, and that his disease was NOT too far advanced for treatment. I asked for a referral outside of our Group Health network.
I was referred by another Coats mom to a retina specialist in Bellevue, who in turn referred us to Dr Saperstein at Vitreoretinal Associates in Bellevue. He told us that Ty would need laser surgery (which he had twice) and Ty just had a vitrectomy on January 7th, less than a month ago. The vision in Ty’s Coats eye has not been restored. Unfortunately, his disease will progress to total blindness in that eye.
But this story is not about my son. It is about two Coats “angels” who are making sock monkeys for every kid who has Coats and is going through treatment. Karen Franklin (in Florida) and Karen Moran in Pennsylvania make a monkey, and the one that goes to the next child is named for the last child. My son, Tyler was sent Oliver, and then “Tyler” went to a young child in the UK. My son’s monkey has only one eye, as opposed to other kids’ monkeys. That has to do with the fact that my son’s friends “lovingly” called him Cyclops when he was first diagnosed.
These women have / give so much support, encouragement and make us feel that we are not alone in this crazy Coats journey. I would love to have a story aired not only about these two wonderful women (Karen and Karen), but to shed some light on this little known, extremely rare disease. There are some tell tale signs of it in most kids, which is a yellow cat’s eye reflex in pictures. Unfortunately, Ty never had that show up in pictures. I scoured years of pictures looking, but found none. Most parents can look back and see when they first recognized the yellow eye.
I will attach a couple of pictures of the sock monkeys. These women are making these on their own time and at their own expense. I think they have found about 60 kids with Coats Disease that are involved in these Facebook pages. Most have very young children with disease that is far more advanced than Tyler’s. I hope you could take the time to look into this rare, but debilitating eye disease. These parents are truly the experts, as they are living through this journey with their own kids. Ty is very lucky to have been diagnosed at such a late age (17). If we can raise awareness about Coats Disease, I will feel successful. I tell everyone I come in contact with about it. When I talked to my son’s pediatrician about it, and asked why they don’t dilate kids’ eyes at a well child check, and he said it is too time consuming to do that. THAT frustrates me.”