On July 23rd I was blessed to have my opinion piece published in the Great Falls Tribune. Source Fill the boot for MDA was taking place and I wanted to help in any way I could. Many people may not realize that the national telethon has been discontinued. When I first heard this I was devastated. Source One of the first things I asked myself was how are we going to find a cure and help these kids keep going to clinics and summer camp? More people are donating funds via social media (think Ice Bucket Challenge) and perhaps this avenue will be less expensive than airing it on television. All I knew was I wanted to get something out there to encourage people to donate. Click on the above link to read my article in the Great Falls Tribune. We need to spread the word about the MDA – what they stand for, who they help, why these kiddos need help and how people can continue to support them.
Over the years, as funds have dwindled and costs have increased, finding camp counselors has also become a challenge. It is not unheard of for counselors to arrive at the MDA camp from other states. Christian made friends with a young man from Chicago one year. He also made a friend for life, Ryan Clinch, who was his counselor for several years and was also a counselor for Drew a couple of times.
I hope you enjoy my article and if you see a MDA Fill the Boot event near you, please spread the word and help out if you can. Our boys look forward to attending camp every summer and the generous donations of so many loving, caring people make it possible!
Today, a young man named Jacob passed away from complications due to Duchenne Muscular Dystrophy. I have been connecting with his mother, Apryl, on Facebook for the last few months. Since Christian passed away in October, I have been able to connect with other mothers who have lost a son to Duchenne Muscular Dystrophy (DMD) or are still fighting the battle like I am. Andrew is 20 and he continues to fight every day despite seeing his friends pass away and losing his best friend, his brother. A kind woman, who is also named April, mailed me a drawing of Christian. Her son passed away earlier in the month and despite her pain and grief, she sent me a beautiful drawing. I have also had the blessing of being able to help another family in Montana by connecting with yet another April on Facebook. Christian loved helping others and I knew he was smiling from heaven when April’s family came over to pick up his electric lift, intercom system and other things that would bring a smile to little Tyler’s face.
So many lives lost. Ever since the boys were young we would hear about their fellow campers passing away. Some as young as 15, some in their early 30’s. Either way, it’s just not fair. It made my heart heavy to hear the boys talk about their fellow campers and friends who had passed away. Friends they laughed with and could be completely themselves with. I see their faces but I cannot remember all of their names. I recognize them when I look through the MDA camp photos from years past.
Since Christian passed away, I have felt this inner pull to do something. I read something a few nights ago that said not to waste my pain. I started a Montana Duchenne Muscular Dystrophy Group on Facebook and I will continue communicating with other families and encouraging everyone to support each other through such a difficult battle. My husband thinks I need to write a book. As frightening as that sounds, perhaps the best place to start is right here, on this blog.
All I know is we need to learn more about Duchenne Muscular Dystrophy – what it does to the young men’s bodies as it progresses, how it affects family and communities and what we can do to support each other and eradicate this monster. There is so much research going on that it makes my head spin. Perhaps if more of us learn about DMD and support research through the telethon, lockups, fill the boot and buying shamrocks, we can find a cure.
Rest in peace Jacob, Natoma, Mikey, John, Keith, Christian and all of the young men who have fought the battle to the finish.