'It’s tough to see your child struggle,' Tillsonburg Ont., youth seeks treatment to stop further vision loss
12-year-old Evan McCarragher-Dixon is considered legally blind and is slowly losing what vision he has left.
His loving family from Tillsonburg Ont., is desperately trying to seek treatment to try and stop his vision loss in its tracks.
"It is just tough to see your child struggle and you feel like you can’t do anything for them," says Evan’s mom Patti McCarragher.
"It would feed great to even slow or stop the progression," says Evan.
Evan has struggled with vision loss since he was a baby, even undergoing surgery on his right eye.
In May of 2020, Evan was officially diagnosed with a rare genetic disease called BBS1.
"It is a progressive degenerative eye disease that leads to peripheral blindness or complete blindness," says McCarragher.
As of July 2021, Evan has lost all of his peripheral vision - he sees the world like he is looking through a straw.
Family members are desperately searching for ways to help Evan preserve his vision.
"I don’t think he realizes how amazing he is. He has given me… sorry (tears up) he has given me the determination to not give up, he never gives up. If there is any treatment in the world, we would do it for him," says Evan’s dad Mark Luciani.
Luciani says there is no treatment for BBS1 currently in Canada, but there is a private clinic in Germany that has helped others before.
The treatment alone would cost the family $10,000 and it is not covered by health insurance, says McCarragher.
To help with treatment, travel costs and accommodations the family has set up a go-fund me page.
"I told Evan if you ever feel depressed and feel like no one loves you, just look at all the support and all the people that have reached out to help him, it’s been awesome," says Luciani.
The family is nearly halfway to their goal as of July 11.
"He’s just so kind and caring to everybody and he is just a super special kid…we're extremely proud," says McCarragher through wet eyes.
"Thank you everyone for helping and supporting the go-fund me page and making this dream possible," says Evan.