Support Caleb's Fight Against Duchenne Muscular Dystrophy
We hope you will join us in supporting Caleb and his family.
Support Caleb's Fight Against Duchenne Muscular Dystrophy
We hope you will join us in supporting Caleb and his family.
Caleb's Story
...written by dad
Caleb was adopted at birth in 2008 and was diagnosed with Autism Spectrum Disorder (ASD) in 2010. In 2013, Caleb was diagnosed with Duchenne Muscular Dystrophy (DMD).
At this stage of the disease's progression, Caleb is only able to move his head, hands, and feet. Medical equipment is needed to lift and move him. Caleb relies on us to dress and undress him, feed him, bathe him, assist him with bathroom needs, and brush his teeth. He needs to be lifted on and off couches, chairs, and beds. At night, he cannot roll over, so when he needs to change positions, someone must help him. If he has an itch or needs to wipe his eyes, someone has to either do it for him or lift his arm and hold it for him.
Caleb’s autism makes caregiving that much more challenging. Caleb’s mom (Cadden) and I love caring for him. He is a joy and an angel. That said, it is stressful, emotional, and exhausting. Over these past few years, it has taken a toll on us. Both his mom and I have ended up in the ER this past year due to issues that have arisen from caring for him.
For those who know me, it’s probably not surprising that accepting help from others is difficult for me. I’ve always believed I should not only be capable of handling my own challenges but I should also be the one helping others. Through the gift of Caleb, God has humbled me and changed my life forever. It’s no longer hard to admit that Caleb needs help and has dreams beyond what his mom and I can provide.
Caleb turned 16 in October. The heartbreaking reality is that 20% of DMD patients succumb to the disease by age 18, and that percentage increases 5% annually. The fact that he may only have a few more years to live has recently overwhelmed me. I want to spend as much time with him as possible and give him everything I can, just as soon as I can.
The Bible says in Matthew 5:4 & 7, “Blessed are those who mourn, for they will be comforted … and blessed are the merciful, for they will be shown mercy.” I am incredibly grateful to my Army Hockey teammate, Darryl, and the rest of the team for initiating this opportunity to make Caleb’s life as full as possible. Perhaps these efforts and our prayers might not only help Caleb but assist others and maybe even contribute to finding a cure.
Blessings on you and yours,
Always,
Marc
