An Ontario Mom Is Raising Money To Give Her 1-Year-Old The Chance To Eat & Breathe On His Own
"He's the most calm, perseverant and determined child I've ever met."
Toba Cooper and her son Ethan Schachter. Right: Ethan Schachter.
Toba Cooper had just one wish for her birthday: a better, healthier life for her son.
Shortly after he was born, Ethan Schachter was diagnosed with Nemaline Myopathy Type 2, a rare genetic disorder that negatively affects all the muscles in his body. At 20 months old, Ethan has trouble walking, swallowing, talking, and breathing on his own.
In a Facebook post on October 13, Cooper said that Ethan relies on a feeding tube and mechanical ventilation to support his respiratory system.
"When he gets the common cold his already low-tone body can’t cope, and he teeters on the edge of life," she wrote. "We are very grateful that this disorder does not affect his brain – we’re told he's actually a bit of a smarty pants. We are also tremendously grateful that his form of [Nemaline Rod Myopathy] is not progressive. That does however mean that he and others living with NM have to cope with what I have described here for life."
So when Cooper heard of a potential treatment that could result in a possible cure, the North York lawyer took to social media to ask her friends, family, and followers for help.
Less than one week later, she has raised over $60,000 and counting.
"It's a bit unreal. You look at the numbers, and you're like, is this really happening? It feels like a bit of a dream," Cooper told Narcity.
Initially, her hope for a possible cure felt far off until a conversation with his doctor, Jim Dowling, changed everything.
How it happened
During a hospital visit, Cooper found out that clinical trials for Dowling's alternative genetic therapy strategies could be possible in five years due to an influx of funding.
After finding out clinical trials were closer than she thought, Cooper jumped into planning mode to find a way to raise more money and committed to matching the number with an inheritance she is set to receive from her deceased parents.
"I had this idea to raise money for Dr. Dowling and to put it out at a birthday request. I thought OK, you know if we raise five grand and we match it, that will be amazing," said Cooper.
After writing the post up in ten minutes and calling several contacts in the medical field, Cooper connected with Muscular Dystrophy Canada CEO Stacey Lintern on October 13.
"Stacey put me in touch with their philanthropy person, and within six hours, the post was live."
In just seven days, the fundraiser has earned $63,132.
Lintern told Narcity that 100% of the funding will go toward Nemaline Myopathy research.
"Our research department is working on a plan to mobilize the research funds that will have the greatest impact in consultation with MDC's Medical Scientific Advisory Committee," said Lintern.
"These funds will provide an opportunity to advance research outcomes and expand on learnings that can be shared with other NMD's which will lead to developments of treatments, better health care outcomes and ultimately a cure."
Cooper said she narrowed the field for Dowling to receive the grant by making it specific to research in Nemaline Myopathy Type 2.
Living with Nemaline Myopathy
Ethan is a funny and bright boy who loves animals, changing the TV channel on his brother and playing peekaboo, according to Cooper.
"He's the most calm, perseverant, and determined child I've ever met," she said.
Although his condition means his everyday life looks a little different from the average toddler's.
At night he uses a BiPap machine to breathe, and at mealtime, he eats through a G-tube.
With the help of therapy, Ethan can say a few words but mainly uses hand signals to communicate with his family and at-home caretaker.
His schedule is filled with 13 medical appointments a week, which can include physiotherapy, speech therapy, and oral motor therapy when he is healthy. In the last 16 months, Cooper said Ethan has been hospitalized 13 times for either a virus, pneumonia, or a collapsed lung.
Cooper acknowledged that while Ethan is perfect as is, she said raising this money has brought a new sense of hope.
"I feel we brought a new sense of hope to this particular community," said Cooper. "I think there's a sort of renewed sense of love for humanity and community coming out of this."
Dowling told Narcity that Cooper's funding will help accelerate their timeline and when clinical trials are possible, the hope is that Ethan could be a patient.
This interview has been condensed and edited for clarity.