Today I became aware of a very special & beautiful soul, named Adyn. Adyn is 14 years old & was born with a rare genetic disease called Spinal Muscular Atrophy (SMA). I received this picture of Adyn rocking our Love Your Genes beanie from her father, Brian, who said, “Adyn’s 2nd outing since her spinal fusion surgery... such a sweet hat & it matches her Hamilton hoodie 😉 It’s actually the best smile I’ve gotten from her once I told her who I was sending it to.”
Like most people with Spinal Muscular Atrophy, Adyn recently underwent a spinal fusion surgery to correct her scoliosis. Having had this same surgery, I can attest to the harsh reality of needing such an extensive surgery at a young age. It’s typically a 6-12 hour long surgery and has a hefty recovery. Seeing her beautiful smile & message from her father made my Friday one of smiles for the rest of the day.
I also got to know more about the big moves this beautiful girl is making. Adyn has expressed a huge love for music at a young age, going to many music festivals and concerts (she currently is digging broadways). She decided to turn this passion & love for music into a Non-Profit Organization called Adyn’s Dream, which helps other families with SMA afford medical necessities. Adyn’s Dream also helps families who can’t afford it make it to the yearly SMA conference.
This ray of light started Adyn’s Dream when she was 10 years old & has raised over $40,000 for individuals/families in the SMA community by hosting live music events. That’s right... 40 thousand smackaroos! This girl is on fire. This year she is going to host the first ever concert event at the SMA conference being held in Dallas, TX this summer called Rolla-pa-looza!
The SMA conference is a yearly “get-together” on a large scale where families, doctors, pharmaceutical reps, other professional, etc. get together and discuss SMA & get to mingle. While this may sound fun, it’s much more then that, especially now. SMA is undergoing the biggest evolution in its history by the FDA approving the first ever treatment for the disease a year ago called Spinraza, that forever changed the history of SMA. Adyn is currently receiving this drug and we are so excited for her future and to see Adyn’s Dream grow.