Hi, my name is Aidan McMinn and I was born on June 6, 2011 and I am 7 years old.
I was born with very low muscle tone and my family noticed that I wasn’t progressing like I should have been over the first couple of months of my life – things that the doctors couldn’t see. My Mom fought for me, pushing through other channels to get me assessed. It took her 6 months but she finally found a way of getting it done! I had appointments at the Developmental Assessment Clinic at the hospital in Regina and I was referred to the Children’s Program at the Wascana Rehabilitation Center where they formed a team of professionals, including a physiotherapist and occupational therapist. There they worked together to figure out what was happening to me. After many more appointments we were finally referred to a Neurologist in Saskatoon and things progressed from there.
In 2014, through Genetic Testing, I was diagnosed with a rare muscle disorder known as SEPN1 Myopathy. Due to this form of muscular dystrophy, it was decided that I should have a feeding tube. I had a nasal feeding tube for a few weeks because they wanted to build me up a little before having the surgery to getthe G Tube put directly into my stomach. I use a CPAP machine at night that helps me breath and rejuvenate my organs so I can function throughout the day without being tired all the time. I do have a wheelchair and a cruiser that I use when I get tired or am going to be walking a lot on an outing.
I first got involved with the Walk for Muscular Dystrophy in 2016, after I was diagnosed with SEPN1 Myopathy. We became involved to meet other families and learn more about Muscular Dystrophy. My family joined the Walk under the name Team Aidan and we had 10 members. Through pledges from family and friends and some really creative fundraising we raised $1,280.00 to help with research and all the other great things Muscular Dystrophy Canada does. Some of the fundraising we did as Team Aidan included bake sales, selling candy bags, a pizza/pasta night with a silent auction, goodie bags and donations through word of mouth.
I think it is important for people to participate in the Walk for Muscular Dystrophy so we can bring more awareness and understanding of what Muscular Dystrophy is. My favorite parts of the Walk are seeing new faces, establishing new friends and sharing our stories with each other.
Some tips I have for first-time participants are - don’t be shy and don’t be afraid to ask questions to learn more. Plus, every little bit counts, even just being there to support others.
So, will you Walk with us?