Gibson
Prince Edward Island
Our son Gibson was three years old the first time we heard the words Duchenne muscular dystrophy. It was 8:00 a.m. on a cold January morning when we received the phone call from our doctor, who delivered the devastating news.
Having never even heard of Duchenne muscular dystrophy before, we knew in an instant our lives and hearts were changed forever. The days, weeks, and months following were some of our family's darkest and most challenging days.
Living in rural Prince Edward Island, we felt isolated and alone as we waited for answers from specialists outside the province. One of our very first appointments was a Zoom call with a geneticist. This was the second time my heart completely shattered, but this time, it was for our one-year-old son, Gunner. A geneticist is a medical professional who explains how diseases are inherited. In Duchenne Muscular Dystrophy, approximately 70% of cases are inherited from their mother, who is a carrier, while 30% of cases occur without being passed from mother to child with no family history of Duchenne. This is known as a spontaneous mutation. We were told to fear the worst since it was unknown if I was a carrier.
Twenty-two days later, genetic testing confirmed that Gunner did not have Duchenne muscular dystrophy, and I was not a carrier.
Gibson was born with the courage of a lion. He conquered milestones, such as walking, without us ever knowing he had muscular dystrophy.
It wasn’t until he was older and having trouble jumping and climbing stairs that we began to worry. The average age of diagnosis is around four when late or missed development milestones become obvious. I still feel guilty for those first few years of his life for not knowing what he was going through. But I will forever cherish those years together before his diagnosis because ignorance truly is bliss.
Gibson has endured more medical appointments in his five years than most would in a lifetime. His bravery and strength inspire us every day. Our family has become very passionate about learning all we can about Duchenne muscular dystrophy and raising awareness.
Putting ourselves and our story out on social media and to the world was a very scary step for us. We were already vulnerable, and our hearts needed protection. However, we realized that research and trials would not happen without money from fundraising efforts like the Walk. So here we are- sharing some of the worst days of our lives.
Sadly, there is no cure for Duchenne, but there is hope. Research is the road to hope. And hope needs help.
