How can we begin to tell our story since it’s written one minute at a time, day by day.
Less than two years ago, our lives changed completely when our three-year-old boy Matheo was diagnosed with Duchenne muscular dystrophy. At first, it was a shock because we had never heard anything about this disease before. There were no apparent signs, so when the doctors told us what our son might have, we couldn’t ask many questions because we didn’t know what he was facing, what our family was facing.
Imagine being told by the doctor not to Google the name of your child’s possible condition, as it will not help. Of course, you then do precisely that. You type in those three words. You are overwhelmed with all the information you find, and you try to find an answer, a miracle!
You speak to specialists, and you read research papers. And still, your questions are not answered. Imagine investing all that time and effort but still not knowing the right thing to do. You feel tired and powerless.
Imagine being told your child may benefit from the only potential treatment available, Corticosteroids. Imagine reading the side effect risks; challenging behaviour, significant weight gain, weakened bones leading to osteoporosis, delayed puberty, stomach problems, and the list goes on. Imagine knowing that a potential trip or fall could cause a break in weakened bones. Imagine having to decide for your child to take the Corticosteroids over the years, with the fear that a fall and break could mean your child comes off their feet and becomes reliant on a wheelchair full time.
Imagine needing to make a decision about your child joining a clinical trial, which could cause disruption to your family life, take the child out of school, it could require invasive muscle biopsies and hours in the hospital. Still, the result may mean your child walks for longer, have a better quality of life and ultimately will live longer.
As a Duchenne parent, there are so many unknowns, so many choices to make, and it is exhausting to think about it.
We are on a race against time, a race to find a cure for this terrible disease. We feel powerless, and the only hope we have relies on the research about DMD for a cure. Still, sadly, if the research is not being funded enough, we have fewer chances for a cure.
That is why we want people to participate with us in activities and fundraisers for DMD. If raising awareness and funds for research is one of the few things we can do as parents to save our son’s life, we will do it.
This happened to our son, our Matheo, and this disease could happen to any other boy. Let’s work together to avoid more kids and families going through this. Let’s all together find a cure for DMD.
Ana Maldonado-Dupras (Matheo’s mom)