Bri was diagnosed with Cystic Fibrosis (CF) at 3 months of age. CF is a genetic disorder that can affect many different organs but mainly targets the lungs, causing frequent lung infections, difficulty breathing and worsening lung function over time. “We spent the first two years of Bri’s life in and out of hospitals. Thankfully, over the next 10 years, her condition improved, and she was able to have a relatively normal childhood. We really felt like we had CF all figured out and that she was going to live a long healthy life," says Sandie, Bri's mother.
Unfortunately, as Bri reached her teenage years, she was diagnosed with a form of diabetes commonly associated with CF. Since then, her health has continued to decline and life has never been the same. Her lung capacity has slowly declined, making it extremely difficult to perform day-to-day functions. She has lost a great deal of weight. Her blood sugars fluctuate dangerously and she has had seizures as a result of this. " Medical issues that we deal with now are not only the challenges with her daily routine, constant medication monitoring and therapy, but also repeated admissions to the hospital," says Sandie.
"In terms of government funding, all we received was a refund of $350 after spending thousands to stay in Toronto. "
In late 2019, Bri had to relocate to Toronto for specialized assessment and treatment. She is now waiting to hear if she will need a lung transplant. To be eligible for a lung transplant, Bri is required to reside within close proximity to Toronto General Hospital. Not only did that mean leaving their home in Sudbury behind for her and her parents, it also meant facing very high accommodation costs in downtown Toronto. For them, this cost would exceed $5,000 per month, a huge hurdle especially given that her parents would need to take leaves from their jobs..”
Patients with “low incomes and high medical expenses” are eligible for a non-refundable tax credit that can reduce the tax amount that patients have to pay at the end of the year. Expenses can be claimed by; oneself, spouse/common-law partner, dependant.Learn More
"In terms of government funding, all we received was a refund of $350 after spending thousands to stay in Toronto. To pay for everything, we have had numerous fundraising events such as a pool fundraiser, porketta bingo, and a GoFundMe page which has raised over $30,000 and been our greatest gift," says Sandie.
After hearing about Bri's story in late 2019, StayWell connected with her family and set them up with subsidized accommodation close to the hospital via Sky View Suites (a short term rentals company) for their initial assessment and will continue to work with the family if a transplant is needed.
"The accommodation StayWell provided us was wonderful. To have a place and feel like you can make it a home is so vital when in this situation. I can’t thank StayWell enough for helping get the condo subsidized for us as the cost of living in Toronto as astronomical. Caregiving is not a job where I can clock in and out. It lasts all day and all night with barely no sleep because Bri can’t sleep, she can’t breath. It takes a huge physical and emotional toll on us. Having the accommodation figured out helped us focus on Bri's health."