Toba Cooper is raising money to help find treatment for her two-year-old son's rare and life-altering disorder.
Ethan Schachter was diagnosed with Nemaline Myopathy Type 2 after he was born, and his mom is fighting to raise money for research that could lead to a therapy, which could greatly improve Ethan's quality of life
Back in October 2022, Cooper started a birthday fundraiser to help raise money for Ethan's doctor, Jim Dowling's research after discovering human trials for his condition could possibly happen in just five years, and she managed to raise over $100k.
Ethan Schachter with his family. Courtesy of Toba Cooper
Ethan's condition weakens his muscles, and he depends on another person night and day.
He can't eat, walk, talk, sleep, or entirely breathe on his own due to his disorder, but a treatment could change all of that for Ethan and allow him to live a more independent life.
"These very basic things we take for granted. Nourishing ourselves, breathing, turning over in our sleep, these are things he can't do right now on his own, and so at a very basic daily needs level, treatment or cure would give him a level of independence that we couldn't have ever foreseen for him," Cooper told Narcity.
This upcoming weekend she is looking to add to that donation pile by hosting an estate sale and bake sale, with items from her deceased parent's belongings and collections.
"As many of you know, my mother died in 2019. I then lost my dad in 2021. My mother was an incredible hostess and a collector of all things beautiful. My father was a putterer so he was a collector of tools and all things gardening. Between the two, I have more platters and pruning shears than I know what to do with," said Cooper in an email.
"SO — I thought I’d facilitate the re-homing of these useful and beautiful items and while I was at it, I figured this would be the perfect opportunity to continue my campaign to help find a cure for Nemaline Myopathy."
Cooper is trying to raise an additional $300,000 for Dowling's research alongside Muscular Dystrophy Canada to get to the next stages of his research and get Ethan one step closer to a possible cure.
Ethan Schachter. Courtesy of Toba Cooper
Cooper says her community and friends have rallied around their family to help throughout this process, and this next fundraiser will have an extra special meaning since it falls on what would have been her mother's 73rd birthday.
She says she can't think of a better way to share her "parents' legacy" than helping build a better future for their grandchild.
Several small businesses have chipped in to provide treats for sale, including Pantry, Lev Bakery and Lollicakes Bakery.
If you plan on attending, you can expect to find a wide variety of baked goods and items for sale, like vinyl records,
best-selling novels, jewelry, gardening tools, kitchen wear, fine china and more.
Blue. bowls and plates. Right Jewelrey. Courtesy of Toba Cooper
Cooper says 100% of the donations will go towards the cause, and any donations over $20 made to the fundraising page online will get a tax receipt.
Treasures & Treats
Ethan Schachter
Courtesy of Toba Cooper
Price: Varies per item.
When: April 30, 2023, 11 a.m. to 4 p.m.
Address: 11 Bayhampton Court, North York
Why You Need To Go: To purchase treats or items with all proceeds going towards charity.