Spreading awareness about SMA has been one of our goals since we first were given Ella’s diagnosis in 2011. We immediately started a blog for our friends and family, so that important updates could be disseminated in one place rather than having to repeat ourselves time and again.
We made videos of Ella as she battled the disease, her triumphs and defeats. We attended SMA fundraisers, conferences and events, connecting with other families who were dealing with SMA. We created our own business of jewelry-making and had a special “Cure SMA” line of products. (That business has been dissolved). We openly and honestly shared our most personal experiences as they related to SMA on social media, all the while encouraging others to do so, too.
Recently we were asked if we would be willing to be on WGN News’ Medical Watch (a Chicago-based news program) to help spread the word about the therapy Spinraza. We jumped at the chance.
Ella arrived at Ann & Robert H. Lurie Children’s Hospital of Chicago on a Wednesday morning at 7:30. She goes through the regular routine of getting ready for her spinal infusion of Spinraza (nusinersen). Before the procedure, we meet with Lurie’s PR representative and she fills us in on what the camera crew will be doing. Ella is wheeled into the infusion room and cameras film the procedure, using bits and pieces of it for the news story.
The next day, the camera crew arrives at our house to greet the kids after school and film a glimpse of what life is like at our house. The story is a positive report regarding the effectiveness of Spinraza. When the report aired the following week, we all stayed up past our bedtimes and watched it, all the while growing closer as a family.
Spreading awareness and sharing our story has been a blessing amid this terrible disease. It has allowed us to form a network of support, a place to release our emotions and a way to hopefully help other families who are going through the same things we are.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.