“It’s hard to watch your child struggle,” Tillsonburg (Ont.), A youth seeking treatment to stop new vision loss

LONDON, ONT. – Evan McCarragher-Dixon, 12, is considered legally blind and is slowly losing his remaining vision.

Her loving family in Tillsonburg, Ont., Are desperately trying to get treatment to try and stop her vision loss in its tracks.

“It’s just hard to watch your child struggle and you feel like there is nothing you can do for him,” said Evan’s mother Patti McCarragher.

“It would be great to slow down or stop the progress,” says Evan.

Evan has struggled with vision loss since he was a baby, and has even had right eye surgery.

In May 2020, Evan was officially diagnosed with a rare genetic condition called BBS1.

“It’s a progressive degenerative eye disease that leads to peripheral blindness or complete blindness,” says McCarragher.

Since July 2021, Evan has lost all of his peripheral vision – he sees the world as if he is looking through a straw.

Evan McCarrager-DixonThe family members are desperate for ways to help Evan preserve his vision.

“I don’t think he realizes how amazing he is. He gave me… sorry (tears in his eyes) he gave me the determination not to give up, he never gives up. there is a cure in the world, we would do it for him, ”says Evan’s father, Mark Luciani.

Luciani says there is currently no cure for BBS1 in Canada, but there is a private clinic in Germany that has already helped other people.

The treatment alone would cost the family $ 10,000 and it is not covered by health insurance, McCarragher says.

To help with treatment, travel costs and accommodation, the family set up a go-fund me page.

“I told Evan if you ever feel down and no one likes you just look at all the support and all the people who have reached out to help him, that’s great,” said Luciani.

Evan, Mark, Patti, AbigailThe family is almost halfway to their July 11 goal.

“He’s so kind and caring to everyone and he’s just a super special kid… we’re extremely proud,” McCarragher said through wet eyes.

“Thank you all for helping and supporting the go-fund me page and making this dream possible,” Evan said.

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