“I wish I had a magic wand to make this better.”
Our hearts still ache from those words spoken by our son Jude. It feels like it was yesterday.
Jude’s words came after the neurologist explained that we needed to choose between two trial medications that do very different things. The problem is he needs both to give him as much time here on earth as possible. The person who coined the phrase “life isn’t fair” really nailed it.
Jude was diagnosed with Duchenne muscular dystrophy at the age of four. One little spontaneous mutation in his genes means his muscles will slowly deteriorate. Doctors tell us he could be in a wheelchair as early as 12 and that we will be lucky if he lives into his late 20’s. They say time is muscle, and there is no cure – only hope. The gripping fear of what lays ahead is something we feel with each breath, a constant heaviness. As parents, our hearts walk outside of us, and with each step, we hear the sound of the clock ticking – time has never felt more sacred.
Since Jude’s diagnosis, our life has consisted of multiple trips to various Children’s hospitals, many medical interventions, surgery, trial medications, tears, tough conversations, and sleepless nights. We are often asked how we hold strength through it all, and our answer is always the same; through the love and support of friends, family and people whose faces we have never met.
You learn to live in the now and appreciate the small moments because the future and the big picture is scary and overwhelming. You learn to live life one careful step at a time, and with each step, we give thanks to people who walk with us. It’s compassion and basic human goodness that bring us to hope.
It was this hope that fueled me and my best friend, Maggie, to create the MASH movement.
MASH stands for movement, awareness, service and health. These core values are the foundation and purpose of our social platform and fundraising events supporting Defeat Duchenne Canada. The aim is to bring awareness to the unmet needs of those living with Duchenne and support the quest for a cure. To build connections and community while helping others mentally, physically and emotionally along the way using backgrounds in education and health care, and as community and fitness leaders. The focus is on movement. Not just in body and mind but socially, advocating to eliminate the social inequities that exist in the arena of rare diseases.
On behalf of myself, my husband, Jeff, and our children, Jude and his sister Kaia, we want to thank you for making a difference, for being in movement with us. Movement in body and mind – movement toward a cure, towards brighter days. Any contribution, big or small, is what fuels hope for families like ours who are impacted by this deadly and debilitating disease. Your generosity means the world to us. Because of you, there is hope, compassion, community, and above all, there is a feeling in our hearts that reminds us we are not alone.
Kasha Mitton (Jude’s mom)