Editor’s note: This story originated as part of a Mount Royal University community service learning course with the partner the Brady’s Foundation. The reporter retained complete editorial control over this story.
Palliative care often comes with overwhelming hardships and a hefty bill.
Many families cannot afford the cost that comes with complex and critical illnesses.
Jaclyn Tainsh wanted to find a solution, so she co-founded Brady’s Foundation, a charity that helps families receive funding for rare and life-limiting conditions.
She started the foundation after her son Brady passed away at the age of seven. Brady was diagnosed with Batten’s disease, a rare disorder that causes seizures, vision loss and a decline in motor and cognitive abilities.
“I remember the feeling of just like hopelessness, knowing how much he [Brady] needed to be comfortable, and like, that’s the least that you want for your child. You just want them to be comfortable,” said Tainsh.
Since its founding in 2019, Brady’s Foundation has helped more than 50 families.
A Family’s Perspective
Sebastian Doherty was only four months old when his skin turned a terrifying shade of blue. His tiny body trembled, then began to shake. In that frantic second, his mother, Sara Doherty, realized something was wrong. She started performing CPR, called 911, and Sebastian was rushed to the hospital.
“It was super super scary because he was blue and not breathing and shaking, I’d never seen a baby do that,” Doherty said.
After hours in the hospital and a couple of tests. Sebastian was diagnosed with polymicrogyria, a condition that affects the development of the surface of the brain and another unknown syndrome, which doctors call the “Sebastian syndrome.” That hospital visit led to a long and unexpected journey in palliative care.
Due to his condition, medical professionals predicted Sebastian would not live past two.
Now he is about to turn 12.
Doherty says her family’s experience with palliative care is not always an easy and happy one, and at times she is scared. She said once you get through the weeds of the sadness and shock, there are so many wonderful things she experiences with her son.
Sebastian can go to school, go swimming, do his homework and spend his time at the Rotary Flames House. This pediatric palliative care facility provides care for children with complex, life-limiting conditions.
As Sebastian grew, Doherty needed to renovate her home, including widening the doors so his wheelchair would fit and installing a chairlift.
Neither her insurance nor Alberta healthcare covered the chairlift.
Before Brady’s foundation, Doherty applied to about five different charities. They were only able to lend a couple of hundred dollars, whereas Brady’s foundation could provide thousands.
Asking for help doesn’t come easily for Doherty, but she was grateful Brady’s Foundation was able to pull through.
“I want families that are struggling just to…ask for help… and don’t be scared of help if you need it,” Doherty said. “It’s super hard, and it feels lonely, but there are so many people out there that want to help you, and it’s amazing…I’m so glad that the Brady’s Foundation was there for us.”
A Nurse’s Perspective
Kelsy Wilton, a nurse, spends her days at the Rotary Flames House, where she provides end-of-life care to children with palliative illnesses.
For more than a decade, Wilton has worked at the house. Since 2012, she has provided around-the-clock care.
Wilton starts her day with a morning report, determining which children she will care for, and getting started on medications.
From there, she charts, creates care plans, and, when necessary, provides life-saving care.
“It’s very unexpected, very surprising. Like, it’s just we’re on our toes all the time,” said Wilton.
While working at the Rotary Flames House, Wilton became acquainted with Jaclyn and Brady. After Brady passed away, Jaclyn approached Wilton to help with the Foundation.
“I knew she would be perfect for the foundation because she has firsthand knowledge of caring for a palliative child, and I knew…she would do well by the parents because she did well by us,” said Tainsh.
As Director, Wilton provides medical advice to families with children in hospice care and determines eligibility for families seeking funding.
Being a nurse and the director of a charity organization can be emotionally challenging. What helps Wilton is going on walks, moving her body, being a food enthusiast and journaling.
Caring for a child who requires palliative care is not an easy job, not only for the nurses but also for the families.
A mother’s gratitude
Doherty says she is grateful for all the people who have helped her son, Sebastian, including the Brady’s Foundation.
She says she’s overwhelmed by the unselfish compassion of those who care for children with special needs.
“You meet these people that you never thought you would meet unless you have a kid like [Sebastian], you can’t believe the kindness of people…and I think why aren’t more people like these people?”