Independent Living on UNC-CH Campus
Donation protected
Mason’s Words:
My life has mainly been an uphill battle progressively becoming steeper with the passage of time. I was born with a terminal disease by the name of Duchenne Muscular Dystrophy, this illness progressively wastes away muscle and replaces it with scar tissue. At this point in my life I am wheelchair bound and my illness has severely limited my physical functioning. Making it near impossible to live on my own, as I am unable to perform basic personal care such as eating or dressing. I am generally cheerful and optimistic. I try to find the bright side and humor in everything life throws at me. I have a passion and love for people, I dream of waking up to help people every day as a psychologist. I start at the University of North Carolina as a junior this fall. I am majoring in Psychology and minoring in Religious Studies.
DMD facts:
Most common lethal genetic disorder in the world. 40% of cases occur spontaneously (like Mason’s) Caused by failure to produce dystrophin, a building block protein. This causes all 3 kinds of muscles to slowly break down on a microscopic level while initiating an immune response that tries to rid the body of faulty muscle cells and replace it with useless scar tissue There are no cures or treatments
Mason’s Mother:
My first born child, Mason, came a few weeks late, but otherwise appeared completely normal. It wasn’t until he was about 4 years old that his differences began to be noticeable. He would tire from walking easily. He couldn’t kick a ball like his peers, ride a bike successfully or go up the stairs normally. He was struggling to learn his letters, so it was recommended to us to see a neurologist for some learning disorder. The actual diagnosis we were given was worse than we could ever have imagined, changing our lives forever in one meeting with a team of doctors. We learned he had DMD. All our dreams and expectations of our life with our beautiful baby boy were changed. He began falling a lot around the age of 6. All of his jeans had holes in the knees and I always had Band-Aids in my purse. By 8 years old, his walking was so difficult and other kids made fun of the odd way he was walking. He had a surgery to keep his legs from drawing up, but the end result of that was to take away his ability to walk. He began using a scooter at school and would get around at home by crawling around. By 10 years old, he started using a motorized wheelchair full time. We have watched the relentless weakening progress, to the present, where he only has use of his fingers and his head. His brain is the only thing that will never be affected by this disease, so I have always encouraged him to immerse himself in learning, a place to escape the confines of his body and soar with his mind. He is a remarkable young man. I am so proud of this person he has become. I always told him, when he was scared and asked me hard questions about his future, that it would be fine, that we could find ways to make sure he could do all of the things that he wanted to do. If he couldn’t walk, we’d get a wheelchair, etc. But there were things that I couldn’t replace for him. He couldn’t easily get into the homes of his friends, so he missed out on birthday parties and boy scouts. Traveling has been a big difficulty, so he hasn’t seen much of the world. I would give anything to be able to make sure that the chance to live independently is something that he will NOT have to miss out on.
My life has mainly been an uphill battle progressively becoming steeper with the passage of time. I was born with a terminal disease by the name of Duchenne Muscular Dystrophy, this illness progressively wastes away muscle and replaces it with scar tissue. At this point in my life I am wheelchair bound and my illness has severely limited my physical functioning. Making it near impossible to live on my own, as I am unable to perform basic personal care such as eating or dressing. I am generally cheerful and optimistic. I try to find the bright side and humor in everything life throws at me. I have a passion and love for people, I dream of waking up to help people every day as a psychologist. I start at the University of North Carolina as a junior this fall. I am majoring in Psychology and minoring in Religious Studies.
DMD facts:
Most common lethal genetic disorder in the world. 40% of cases occur spontaneously (like Mason’s) Caused by failure to produce dystrophin, a building block protein. This causes all 3 kinds of muscles to slowly break down on a microscopic level while initiating an immune response that tries to rid the body of faulty muscle cells and replace it with useless scar tissue There are no cures or treatments
Mason’s Mother:
My first born child, Mason, came a few weeks late, but otherwise appeared completely normal. It wasn’t until he was about 4 years old that his differences began to be noticeable. He would tire from walking easily. He couldn’t kick a ball like his peers, ride a bike successfully or go up the stairs normally. He was struggling to learn his letters, so it was recommended to us to see a neurologist for some learning disorder. The actual diagnosis we were given was worse than we could ever have imagined, changing our lives forever in one meeting with a team of doctors. We learned he had DMD. All our dreams and expectations of our life with our beautiful baby boy were changed. He began falling a lot around the age of 6. All of his jeans had holes in the knees and I always had Band-Aids in my purse. By 8 years old, his walking was so difficult and other kids made fun of the odd way he was walking. He had a surgery to keep his legs from drawing up, but the end result of that was to take away his ability to walk. He began using a scooter at school and would get around at home by crawling around. By 10 years old, he started using a motorized wheelchair full time. We have watched the relentless weakening progress, to the present, where he only has use of his fingers and his head. His brain is the only thing that will never be affected by this disease, so I have always encouraged him to immerse himself in learning, a place to escape the confines of his body and soar with his mind. He is a remarkable young man. I am so proud of this person he has become. I always told him, when he was scared and asked me hard questions about his future, that it would be fine, that we could find ways to make sure he could do all of the things that he wanted to do. If he couldn’t walk, we’d get a wheelchair, etc. But there were things that I couldn’t replace for him. He couldn’t easily get into the homes of his friends, so he missed out on birthday parties and boy scouts. Traveling has been a big difficulty, so he hasn’t seen much of the world. I would give anything to be able to make sure that the chance to live independently is something that he will NOT have to miss out on.
Organizer and beneficiary
Woody Humes
Organizer
Pittsboro, NC
Mason Meacham
Beneficiary