When she was 14 months old, my daughter, Erinne, was diagnosed with spinal muscular atrophy (SMA).
Essentially, SMA is the pediatric version of ALS (Lou Gehrig’s disease).
We were told that she wouldn’t live past 8 years old. She’s clearly blown right past that prediction – she is 18 now, and is an incredibly positive, optimistic young woman.
I’d love to say she hasn’t slown down a bit, but the truth is – she has. Erinne used to walk with the assistance of a walker, but the disease has progressed and limited her physical abilities. She now she uses a power wheelchair, needs assistance to feed herself and breathes with the help of a ventilator while she’s sleeping.
One of the challenges with this disease is managing Erinne’s pain. She has four rods in her spine and a dislocated tailbone that causes severe pain. We tried many avenues to manage the pain without much success until our care team suggested a referral to palliative care services.