Mckenna Ellixson of Central Bucks was born on January 28, 2009. Over the first twelve months of her life she met all the developmental milestones. When she started walking, we noticed a waddle back and forth instead of putting one foot in front of another and she fell more often than other children her age. 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 has changed our lives forever. The doctors at CHOP Neuromuscular Clinic evaluated her and gave us the diagnosis. They said, “We believe your daughter has 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 is no way for us to determine the pace at which the disease will progress and, unfortunately, there is no treatment or cure for this disease.” On March 20, 2012 the diagnosis of Type III SMA was confirmed with the results of a genetic blood test.
Today, Mckenna is eight years old. She cannot run as fast as other kids her age and falls often for no reason. She cannot jump or climb and going up the stairs is challenging. We are doing the best we can to keep her strong, but we know that the disease will progress over time. We are fortunate that Mckenna is now receiving Spinraza, the first-ever FDA approved treatment for SMA. We are thrilled with this latest development, and continue to support Cure SMA to help fund future research breakthroughs.
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.”
Each year, we hold our Muscles for Mckenna Fundraising Gala event with one goal: to fund a cure for SMA (spinal muscular atrophy). Proceeds from the event benefit Cure SMA, the leading SMA research organization. The event is hosted by Jim and Amy Ellixson in honor of their daughter, Mckenna. Join us for a memorable evening of food, dancing, and hope at The Crystal Tea Room on March 9, 2018! The evening includes a deluxe open bar, dinner, dancing, silent and live auction plus raffle. You'll also enjoy live music by The Heartbeats.
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