August is SMA awareness month. When we started our journey over 5 years ago we had no idea what the future would hold. We were relieved to have a diagnosis for Melia, but no idea how to move forward. Cure SMA gave us the answers we needed.
Emmanuel and I were unaware of our genetic, family history. To have SMA, both parents must be carriers. In very rare cases a genetic mutation can occur. We conceived both Marin and Melia through IVF and thought all the necessary tests were done. SMA was not one of the diseases screened for during IVF or when Melia was born. Now with newborn screening in 37 states, including California, families will have answers and a plan with life saving treatments for their baby. Cure SMA’s advocacy program has worked tirelessly to make this happen and are determined to have newborn screening of SMA in every state in the country.
Melia has been receiving spinal injections of Spinraza every four months since 2017. Spinraza is the first ever treatment for SMA that was approved by the FDA in December of 2016. Melia has been in the Scholar Rock trial at Stanford since March 2019. She goes in every month for an infusion of a drug called SRK-015. The trial is moving toward FDA approval! None of these drugs are a cure, however we have seen incredible progress with these treatments. These drugs have stopped the progression of the disease and Melia is gaining motor function she once lost. If it wasn’t for CureSMA’s dedication to research this wouldn’t be possible.
My greatest source of trusted information is not only through Cure SMA, but the incredibly supportive families we have connected with through Cure SMA. I wouldn’t have this network of families if it wasn’t for Cure SMA’s annual conferences and Summits of Strength we’ve attended. Our first conference was in Dallas in 2018. These Cure SMA events give Melia and our family the opportunity to grow relationships and create new ones.
All of these critical aspects of Cure SMA have directly impacted our family. Their dedication to research, advocacy, and family support has made an immeasurable impact on the SMA community. I can only begin to imagine the stories others might have.
Cure SMA’s Northern California chapter is having their annual Walk-n- Roll on September 18th. You can join team Loving Melia at not cost and also donate to this incredible, non-profit organization that is literally saving Melia’s life. The link is in my profile. Please message me with any questions. Thank you
Love, the Galan Family