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Cure Duchenne
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- Posted in DMD, Duchenne Muscular Dystrophy, Jackson
JACKSON’S STORY
“By donating to the wonderful organization that is CureDuchenne you are not only helping Jackson, but an incredible amount of other little boys fighting this battle.” – Crystal, mother of Jackson.
Jackson is a 9-year-old lover of animals with big dreams and plans for the future—his hope is to become a zookeeper. His favorite animals include groundhogs and guinea pigs, and the highlight of a recent family trip to an aquarium was seeing the otters. He loves to play Super Mario, cuddle with his Corgi puppy, Rexy, and travel. “My dream is to travel to New Zealand.”
But Jackson also has Duchenne muscular dystrophy. “Having Duchenne can be rough some days because it tires my muscles out,” says Jackson. “If I could have a day without Duchenne I would run around…I would love to be so tall that I could ride all the big rollercoasters.” When asked who his hero is, Jackson says, “My hero is my Mom. She takes care of me and she loves me.”
The imminent result of Duchenne weighs heavily on Jackson’s mom, Crystal. She sees in her son an incredibly bright little boy who hasn’t fully felt the wrath of Duchenne upon him. Although still strong and able to walk, Crystal sees how Jackson tires and fatigues quickly each day. “I think every single day of research and a way to halt this disease in its tracks. I wish every single day of my life that I could take it from him, that there is something that I could do, but this disease doesn’t offer that possibility. I want to tell him that he will be able to go to prom, and pick a college and have his own apartment. I wish every single day of my life that I could take Duchenne from him. I don’t ever want to envision a future without him in it.”
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Connect with me
In 2012 my oldest son, Jackson, was diagnosed with Duchenne Muscular Dystrophy. At that time I had never heard of it and so began this journey. I realized that because of the extent of the diagnosis, I don't have much time with my dear son. I took a year to process, grieve, get upset, test my faith, and then to make the decision of how I would let this affect me. The result is this website, Joy in Jackson's Journey, because I realized that instead of falling down with the pain and heartbreak of my situation, I'm choosing to rise up and face it head on, to fight for my son and to show how I not only survive through this new normal, but thrive.
Our Story
It all began back in January of 2012, Jackson was 3 years old and had a diagnosis of Autism (which I’ll share about later), and I took him to see a Biomedical doctor to try the gluten free/casein free diet and supplements to see if if would help him out. After meeting with the doctor she ordered a routine bloodtest to make sure that there wasn't any underlying disorders before beginning supplements.
A few days after getting Jackson’s bloodwork done, I got a phone call from the Doctor. It is a day I will NEVER forget. First of all, because I knew she was away on a family vacation and she was calling me and #2) because she then said, ”I received Jackson’s labs and I need to discuss something with you”.
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