Ontario mom fundraises nearly $80,000 for 20-month-old son's rare neuromuscular condition

Toba Cooper with her son Ethan Schachter. (Courtesy of Toba Cooper)

Toba Cooper wanted something different for her birthday this year: to raise money to find a cure for her youngest son.

“As a general rule, I don’t ask for much. In truth, I am fortunate enough not to need to,” Cooper writes in a Facebook post.

“But this year is different. This year I think I need to ask for something. I need to ask for help finding a cure for Nemaline Rod Myopathy.”

Nemaline Rod Myopathy (NM) is a rare neuromuscular condition that affects roughly one in 50,000 people. Cooper tells CTV News Toronto her 20-month-old son, Ethan Schachter, has been diagnosed with Nemaline Myopathy Type 2.

This particular form of the disorder is not progressive, however, it does affect all the muscles in Ethan’s body. He is not able to swallow or breathe on his own, and cannot speak, though Cooper says Ethan has 50 ASL signs he uses to communicate.

“When he gets the common cold his already low-tone body can’t cope, and he teeters on the edge of life,” Cooper writes on Facebook.

Ethan Schachter. (Courtesy of Toba Cooper)

When Cooper first spoke with CTV Toronto, Ethan was back in the Intensive Care Unit (ICU).

“Ethan has spent – we approximate – about a third, if not closer to a half, of his life in the hospital,” Cooper said. She later adds it has been his fourteenth time at the hospital in the last 16 months.

Ethan was admitted to the ICU because his lungs were clogged with mucus.

“When he gets even a little bit sick, and he has mucus from his nose going back into the back of his throat, [Ethan] can’t do what you and I would do, which is swallow it,” Cooper said. “Instead gravity does whatever it does, and the mucus goes wherever it goes, and that means a lot of it goes into his trachea, into his lungs.”

THE FUNDRAISER

Cooper says Dr. James Dowling, from Toronto's Hospital for Sick Children, has been working on a treatment for Ethan’s exact disorder. She says with some support, Dowling could reach clinical trials for gene replacement therapy in the next five years.

“Just think, if he had, you know, 90-plus years unaffected by this disorder, the six that he was affected would be like a drop in the bucket,” Cooper said.

“So I thought, ‘How amazing would it be if I just raised a little bit of money to support this research that’s already being expedited?’”

Cooper swiftly organized the fundraiser with Muscular Dystrophy Canada, six days before her birthday, ensuring everyone who donates receives a charitable tax receipt.

The initial goal for the fundraiser was $5,000, with all of the proceeds going directly to research. In about 20 hours, Cooper says about $20,000 was donated.

“I thought, ‘wow, if we can do that much in a 24-hour period, what can we do in a 48-hour period?’”

By the time her birthday came around, over $57,000 had been raised. As of Saturday, the fundraiser is just over $750 away from $80,000.

Ethan spent five days at the ICU, but now he is recovering “decently” at home.

“Every hospital visit is a reminder of how badly we need to get to this cure,” she said.