It has been a little over two years since doctors told Chris and Kelly Jankowski that their first-born son, William, had spinal muscular atrophy (SMA) type I. In the immediate wake of diagnosis, Cure SMA was able to help provide the Jankowskis with the resources to help them make decisions about care: asking the best questions to their medical team, advocating for physical therapy, and insisting on the resources that gave William the best chance at a full life.
William’s diagnosis came during a time of hope for the SMA community. He was diagnosed with SMA just a few months before the first FDA-approved therapy for SMA. The first month after diagnosis, they worked with doctors to investigate getting William into clinical trials. Shortly after, Biogen announced the Early Access Program for Spinraza and at six and a half months, William headed to Lurie Children’s Hospital in Chicago for his first treatment.
Rather than enduring a decline in physical abilities, treatment gave William the opportunity to experience many things. As Chris reflects on his son’s life, “Wills understood the satisfaction of hard work and was so proud of himself when he got to test a new skill. This kid woke up happy every day, ready to work and curious to see what adventure might happen to him next.” Chris and Kelly believe Cure SMA “has the same spirit and ambition that” William had throughout his life.
Hoping to reflect the same spirit and ambition they saw in their son, Chris and Kelly have taken part in Cure SMA fundraising events including: three runs, two Walk-n-Rolls and three galas. Not only do these events have a profound impact in the SMA community, they have given the Jankowskis’ friends and family a way to show their support and an outlet to make a lasting difference in memory of William. Chris and Kelly continue to share their story and spread awareness through Cure SMA’s advocacy programs with visits to Capitol Hill and the FDA’s Patient Focused Drug Development meeting.
Now, the Jankowski’s mission is to help other families who are coping with SMA. They are committed to transform the lives and trajectory of this disease. The Jankowskis are excited for the future of the SMA community and eager to welcome their second child in February 2019.
With the new breakthroughs in SMA research, William was able to live a full life. Although his life was short, William’s impact continues through his parents’ ongoing determination to support Cure SMA – and change the course of this rare disease.