On Christmas morning, while many families were celebrating the holiday, the Collins family was facing an unimaginable farewell.
At 7:55 a.m., Michael Austin Collins, 19, passed away peacefully, surrounded by his parents, Chris and Cathy, and his sister, Samantha. Michael had lived nearly his entire life with Vanishing White Matter (VWM) disease, a rare and progressive neurological condition he was diagnosed with at just 18 months old.
Doctors once told his parents not to expect him to reach his 10th birthday. Instead of focusing on limitations, the family chose to focus on living fully. For 19 years, Michael’s life was filled with experiences many thought impossible — graduating from grade school and high school, celebrating milestones, travelling, fishing, swimming, enjoying campfires, amusement parks, and spending cherished time with family from northern Ontario to Florida.
In recent years, Michael’s condition worsened, and the pain became too severe for him to make his favourite annual road trip to Cocoa Beach, Florida. Now, after his passing, his family is determined to honour his spirit in a way that reflects the life he lived.
Rather than holding a traditional funeral, the Collins family is planning Michael’s Final Road Trip — a memorial journey carrying his ashes from their family trailer to Cocoa Beach, stopping at the places that brought him the most joy.
After nearly two decades of full-time caregiving, the family hopes to focus on healing without the added burden of financial strain. A fundraiser organized by Tanya Veer-Casey has been launched to support:
- Travel and accommodation costs for the memorial road trip
- Final arrangements and cremation expenses
- Ongoing support as the family adjusts after 19 years of dedicated caregiving
As of the latest update, $18,579 of the $20,000 goal has been raised through 177 donations.
Those wishing to support the family can find the donation link through the associated fundraiser.
Michael’s loved ones say his journey was never defined by illness, but by love, resilience, and unforgettable moments — a legacy they now carry forward on one final road trip.
Photo credits : https://durhampost.ca/vanishing-white-matter-michaels-final-road-trip
