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What the Movie 'The Ataxian' Means to Me as a Special Needs Mom

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Chances are, if you’re reading this, life possibly threw you a curveball. The path you are traveling is not what you expected or imagined, but you’re doing all you can to stay afloat and find strength, hope and camaraderie from anyone doing the same. 

This is why The Mighty is so fantastic. As the mother of a daughter with special needs, I appreciate beyond measure its stories of everyday triumphs and real life experiences. They tell us we’re not alone on this journey and encourage us to keep going – to put one foot in front of the other.

This was Kyle Bryant’s mantra when he first learned he had Friedrich’s ataxia (FA), a progressive, degenerative neuromuscular disease. Actually, it was not the minute he was diagnosed. Like the rest of us, he went through a period of grieving for the life he would not live. And then one day he decided to live the life he could – and inspire as many others as he can to do the same.

I first learned about Kyle through close friends whose young daughter was recently diagnosed with FA. In June 2015, The Ataxian, a documentary about Kyle and those who love him premiered at The Dances with Films Festival in Los Angeles to critical acclaim. 

Watching this film is no walk in the park. A Disney movie it’s not. A cure has yet to be found – and it’s gut-wrenching to see what this disease does to the body of those diagnosed, as well as to the mind and spirit of their loved ones. At several points in the beginning, I wanted to walk away. But at the same time, it’s amazing to see how some people respond when handed what others might consider a life defined by challenge.

Kyle Bryant is simply not a sad guy. Brimming with hope, courage and conviction, he will not be deterred by the fact that his muscles are failing him. Instead, he uses everything he has to fight and to compete in the Race Across America: “The most grueling bike race in the world,” to raise awareness and support for FA.

The movie follows Kyle and his teammates on this journey interspersing breathtaking footage of America’s mountains and heartland with deeply personal interviews of participants and parents. One of the first voices the audience hears is that of Kyle’s mom, who relays every mother’s instinctual wish: “I just want to make life easier for him.” 

I know how she feels. My daughter was diagnosed with a chromosomal abnormality when she was 22 months old. A brief phone call erased any of the typical visions I had for her. Cognitively, she would never develop beyond the age of 5 or 6. Like Kyle’s mom, I want to make life easier for her.

As I felt at the beginning of this movie, in the beginning I wanted to hit the pause button. I didn’t want to learn about all the diagnosis would entail. But then you realize you’re in the race whether you initially wanted to be or not.  Maybe you didn’t sign up for it – but you’re registered nonetheless. So one mile goes by after another and you put your head down and focus on doing everything you can to make your child’s life better. You enlist professionals and visit therapists, you research and read everything you can, you attend conferences and lectures and some days, it’s all you can do to sit down in a church or on a park bench and pray.

And slowly you realize there’s no more you can do than what you are doing. Then you look up and see you’re surrounded by a team that supports and loves you and will do everything they can to see you through – and somehow you all manage to laugh and to hug and to celebrate. That part of the movie is fantastic to watch. That part I never want to end.

“The Ataxian” is not a Disney movie, but to me, it’s a film by, for and about the Mighty among us who do everything they can to put one foot in front of the other and in doing so remind us, whatever course we travel, to do the same.

Check out the movie’s website for more information.

Lead photo source: “The Ataxian” press kit

Originally published: July 11, 2015
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