Hope for Hannah
Today (July 12th), Hannah had her 12th spinal tap—the procedure that she has been getting every 4 months since she was just 18 months old—to give her Spinraza. This medication has changed her life, and our lives forever. While we have learned what to expect each time, these days are never easy for her or for us. Watching her be put under anesthesia, waiting in the waiting area and trying to distract ourselves from worry, and waiting for her to wake up—none of this is easy for us as parents no matter how many times we do it. Her last treatment in March was particularly traumatic for us because Hannah had a very hard day—we were all in tears and struggled for weeks afterwards. The pain of seeing your child in pain is a different kind of pain.
Every 4 months, we gather our strength and resolve and do everything we can to make the day as easy as it can be for her. Spinraza has helped her so much—she has gone from wheelchair to walker to forearm crutches to independent walking for hundreds of feet; in the last year, she also gained the ability to ride a pedal bike and stand up on her own without assistance—enormous milestones for someone with SMA. She works so hard on her strength, doing weekly PT, horseback riding, and swimming, and while she can fall easily and tire easily, she never gives up and always gets back up when she falls.
Hannah is a warrior, a teacher of what it means to be courageous and brave in the face of overwhelming hurdles. And, she is full of life and love and incredible kindness and compassion for others.
This year, we are again fundraising for Cure SMA, an organization which supports families fighting SMA, advocates for legislation for newborn screening, and which helps fund the incredibly important life-changing research that led to Spinraza and other drugs and that will ultimately stop SMA. We are so grateful for Spinraza, and we are also hopeful that someday Hannah will not have to go through spinal taps and anesthesia. Gene therapy is showing incredibly promising results, and there are multiple drugs being studied which will hopefully work and be approved in the next few years, giving more hope to all those battling SMA. Please consider donating to our fundraiser this year.
We are living in unchartered territory—Hannah continues to make gains every day. And yet, there is so much that we don’t know about what the future will hold. So, we focus on being the best parents that we can be and on keeping our hope alive. We will never, ever, stop fighting for Hannah. Thank you for supporting our family and fighting with us, and most of all for believing in Hannah.