Mckenna Ellixson

Mckenna was born on January 28, 2009. Over the first twelve months of her life, she met all the developmental milestones. Once she started walking that we noticed that her muscle strength was impaired. At first the doctors thought she would grow out of it, but after many months of therapy and not much improvement, we knew something was wrong. On February 10, 2012, we had our answer, and it changed our lives forever. The doctors at CHOP Neuromuscular Clinic evaluated her and gave us the diagnosis. They told us she had Type III Spinal Muscular Atrophy (SMA). Type III is a less severe form of the disease. Children with Type III tend to have a normal life expectancy; however, there was no way to determine the pace at which the disorder will progress and, unfortunately at that time, there was no treatment or cure.
Today, Mckenna is a thriving teenager in 10th Grade.  Mckenna knows that she is different than other teenagers around her, but that does not slow her down. She rolls around the halls of her school on her yellow scooter with a big smile on her face.  She is active in yoga and swimming.  She also rides a hot pink electric trike with her friends and family, something we never thought would be possible.

We are fortunate that Mckenna has been receiving therapy over the last seven years, first with Spinraza and now Evrysdi and both have helped to stabilize the progression of the disorder.

Despite all the challenges that Mckenna faces, she has an amazing spirit and is determined to get where she wants to go, no matter how long it takes or how awkward it might be for her. She is our SMA warrior, fighting every day. When she falls, she gets right back up and just says, “I’m OK, mom” and if she needs help, she just asks for it.

There’s great reason for hope, but Cure SMA's work is not done. Thanks to the dedication of its community, the generosity of its supporters, and the ingenuity of Cure SMA's research partners, they have reached a new phase in their mission to develop a treatment and cure for SMA. Now, more than ever, we stand ready to shape a future that will change lives and give new hope to all those who are affected by SMA, and we can’t do it without you. Please support us today by joining us at our 13th annual event or by making a donation to Cure SMA.