It took me weeks to come to terms with the fact that there were no easy answers. I couldn't change the past or the diagnosis, so I focused on educating myself and becoming Tinslee's biggest advocate. We underwent all the necessary tests, scans, and procedures, and spent a year going in for lab work and check-ups.

People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.