Help Evan McCarragher- Dixon fight blindness
Hi our names are Mark and Patti and Evan is our beautiful son. Evan has recently been diagnosed with a rare genetic disease called BBS1. BBS1 puts him at a high risk of various illnesses such as acute kidney failure, obesity and diabetes and vision loss. The latter is the reason why we are asking for help for our sweet boy. The worst part of this disease for Evan is that he has RP (retinitis pigmentosa). This is a degenerative eye disease that leads to blindness. At the age of 12 Evan is already legally blind. He has zero peripheral vision, he can only see centrally ( as if you are looking through a straw). He unfortunately has 100% night blindness. Even at dusk, when we can see perfectly well, Evan is in total darkness. He has never in his life seen the stars. In the last year he has learned to use a cane, something that is very difficult for him to accept when all of his friends can run and play freely, ride bikes and play sports. He is at an age where he is worried kids will make fun of him for not being good at sports, he is embarrassed to use his cane and doesn't want anyone but his best friends to know about his vision loss. Until 2 months ago when we got the diagnoses and found out he had lost all peripheral vision, he was already talking about how excited he was to turn 16 and get his license. Something we all take for granted will never be a possibility for Evan. When the doctor said he would never drive, we could see his heart just shatter as he tried to hold back his tears and be brave. This breaks our hearts as his parents to see him struggle. He is so incredibly brave, comforting us that he will be ok when he goes totally blind. That he will "manage" and tells us mommy/daddy "don't worry, I will be fine". For those of you that know our Evan, know that he is the kindest, most gentle soul. He has won multiple awards at school and all of his teachers tell us year after year what a kind, loving and generous boy he is. He is the first to include others and offer help when he sees his friends struggling. He has already touched so many people in his short life and we have been told countless times, that he is an old soul.
Unfortunately, there is no treatment for RP in Canada. His BBS1 is so rare that there are no clinical trials or experimental treatments available. We have been told that there is nothing that can be done, they have no idea how quickly this will progress and if he will lose central vision or if he will one day be able to see the faces of his own children.
After countless hours of research, as I'm sure any parent would do, we have found one glimmer of hope. In Berlin Germany, there is a private clinic that may be able to help slow or stop the progression of his RP. In some cases, some of his peripheral and/or night vision may be restored. The treatment is not covered by OHIP or insurance, and it's $10,000 per treatment. In addition to the medical cost, we have the expenses of flights, 2 week hotel stay, meals etc.... It is unclear how many treatments Evan will need. It could be anywhere between 2 to 4 treatments over the next 24 months.
We are not ones to ever ask for charity or financial help, but for our son we will do anything. This is our last and only hope to hopefully stop him from being completely in the dark. We are asking from the deepest part of our hearts, that if you can help, Evan needs you. No words can express our gratitude to each and every one of you that opens your heart to us.
Mark and Patti
