To save boy, he may never come back home

Posted at 5:51 PM, Dec 30, 2015
and last updated 2015-12-31 10:32:09-05

AMELIA, Ohio -- It's a side of love no family wants to face: In order to get their son treatment for his a disease, he would have to leave the country.

And if it works, he might never come home.

Ivan Elliot, 2, was diagnosed with Allan-Herndon-Dudley syndrome. His brain's voluntary motor functions don't connect properly with his body, from focusing his eyes to moving his feet.

"I can see that he wants to do things. It's heartbreaking to have to sit there and watch your kid be upset over that type of stuff. I'd give anything to have Ivan walk around and be normal," his mom, Shannon Russell, said.

Ivan needs round-the-clock care; thankfully, he's showered with love from his extended family.

"I feel so blessed because I have so many family and friends coming together to help me and Ivan, and they've shown so much love," Russell said.

Now, Ivan's family is looking to get him to the Netherlands this summer for a trial treatment, involving the drug Triac. It's not available in the United States, and that poses a problem for Ivan's grandpa, Charles Elliot.

"It's a six-year trial, and if it does work, he'll have to be on it the rest of his life," Elliot said.

For him and Ivan's other relatives, it's a double-edged kind of love and support.

"We look at it two ways: He's going to get what he needs, but we also lose him. Because if it works, they can never come home," he said.

To help fund their trip, the family has set up a GoFundMe page; they're hoping to raise $100,000.