We spent the day at SickKids Pulmonary clinic today. It was great to meet another specialist for some perspective and info on Stella’s condition and SMA in general. Learned what to look out for in Stella’s breathing and discussed getting her into a sleep study to give us a benchmark moving forward. They also did Blood Oxygen and Lung X-Rays and everything was A-OK.
While we were there we bumped in to Tori Lacey, the young woman with SMA that received a signed guitar from Justin Bieber at a concert in Tampa Bay and recently auctioned it off to raise money for SMA research. She and her mother were gracious enough to say hello to us and Stella was as bright eyed as usual. We exchanged contacts and we look forward to talking with Tori’s mother about getting involved in local fundraising efforts.
Here is her story from CTV news: