When Toba was planning her son Ethan's 3rd birthday party, she said it was "bittersweet" - many children with his condition don't survive past the age of two.
Ethan was diagnosed with Nemaline Myopathy (Type 2), an ultra-rare neuromuscular condition that affects all of a person’s muscles, including those needed for breathing and eating. He relies on a feeding tube to eat, and a tracheostomy and ventilator to assist his breathing.
While his brain is totally unaffected, simple illnesses like a common cold are life threatening.
And yet, despite 30+ ICU admissions amounting to 1/3 of his life spent in hospital, numerous surgeries and countless other procedures, Ethan smiles bigger than most, carries out mischievous plans, is obsessed with animals, lives for a thrill, and brings endless joy to his parents and brother, Jaxson.
Here are some pictures from his 3rd birthday celebration capturing a special visit with therapy dog Harlow of Corporate Canine Therapy. Since Ethan spends much of his time in the ICU, this is the closest he can get to a pet of his own (at least for now).
Ethan’s doctor, Dr. Jim Dowling, a neurologist and scientist specializing in rare genetic diseases The Hospital for Sick Children, and his team are leading pre-clinical genetic therapy development for several potential gene-based therapies that could help treat Nemaline Myopathy and other incurable rare diseases.
Philanthropy is what makes this type of precision-medicine research possible - research that has the potential to change the lives of tens of thousands of children living with rare diseases, just like Ethan.
To date, Ethan’s family has raised close to $300,000 in support of Dr. Dowling’s research, including from a recent neighbourhood Block Party that brought together local businesses and hundreds of community members, all in support of precision child health and a precision treatment for Ethan.
For more information and to support Ethan's fundraiser: https://bit.ly/3YIB1Gu
📸 Galit Rodan