Most of y'all know my son Mark was diagnosed with Duchenne muscular dystrophy at 3 years old. As an infant and toddler, Mark struggled with meeting almost all of his milestones. We did extensive therapy for the first 3 years of his life trying, to help him meet those milestones, such as sitting up, crawling, speaking and walking. After 3 long years Mark was officially diagnosed with Autism. It seemed to explain a lot of his struggles but, as his mother, I still wasn't convinced that there still wasn't something more happening. In those early years, doctors just brushed me off as a first time mother, who just worried too much. I couldn't find anyone who would listen to me. I had exhausted most avenues that were available to us locally. Eventually, I was referred physical therapist, but she was about 2 hours away from us. I started taking Mark to see her twice a week. It was a 4 hour road trip and I was pregnant with my second child, but I didn't know what else to do or where to turn to for help. After one of our therapy sessions the therapist called Mark's neurologist and said you need to do further testing on this child. Finally someone heard my concerns and didn't dismiss me as a first time parent who just didn't know what they were doing. After a blood test, in December 2007 Mark was diagnosed with Duchenne muscular dystrophy, a hereditary, terminal, and debilitating disease. At that time I was 7 months pregnant with my second son Edison. I was told that I should highly consider an abortion because my unborn child had a 50% chance of having the same illness. I was left facing a world of uncertainties. I refused to believe God would give me more than I was capable of handling. Edison was born in February 2008, he is healthy and does not have the disease. Mark has faced so many obstacles in his life, from self-contained special needs classrooms, being bullied, struggling to make friends and not being able to live a life that most children get to enjoy. We've had our far share of school problems and have even had churches ask us not to bring Mark back. It's been a real struggle to find acceptance. We have also met some of the most amazing selfless people too. Through MDA summer camp we have met so many loving and caring people. We have also met some awesome people who have helped Mark in school and have continued to root for him on his journey. Mark got his first wheelchair in kindergarten. Through the years as the illness progressed, he has continued to slowly lose his ability to walk. Up until June 15, 2024 Mark was able to walk inside our home, to his bedroom, kitchen and TV room and he uses a power wheelchair outside of the home. When we did leave the house, Mark could transfer to the vehicle and we would bring his manual wheelchair. Unfortunately on June 15, 2024 Mark's legs gave out from under him, shattering his tibia and fibula. He was taken by ambulance to the hospital, where he was admitted for 2 days. He was then transported by ambulance to a second hospital who could provide better care. He needed surgery but was high risk for anesthesia so we decided to try to cast him and see if that could work. They casted him once, over correcting the bone, so then they had to remove that cast and try again using an x-ray machine to help guide them. We were taken home by ambulance, to figure everything out alone. After 5 days we had a follow up, again being taken to that appointment by ambulance. We decided that he would ultimately need surgery. On June 27, 2024 Mark had a metal rod placed inside his left tibia. This was done in hopes to get him up moving faster, to help preserve what little walking he was able to do. He spent a total of 7 days in the hospital and even went to ICU over night after the surgery. We are grateful to say that his surgery was a success. Unfortunately Mark is no longer able to walk. We were hoping that he'd have a little more time before needing a fully handicapped accessible van. Mark is currently being transported to doctors visits by either ambulance or other transportation services provided by state Medicaid. As much as we are grateful for these types of services, it has been difficult relying on outside resources to provide transposition. This has left Mark is unable to leave the house. Simple things like grocery shopping, a trip to target, shopping for clothing, going out to lunch with his parents, going to the park with his siblings, a family trip to the zoo, the movie theater, all the leisurely activity we often take for granted, he's unable to do. As an 18 year old young man I can't imagine the pain and frustration he must feel. He desperately wants to go see his siblings achieve awards at school or sports events, but it's impossible without proper transportation. Every December we like to drive around and look at all the holiday decorations, this year he might not get that chance. We are currently looking to purchase a full auto conversion van, which will cost somewhere around $80,000. Please help us, help Mark see the Christmas lights this year. #TeamMark
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