What It's Like to Be a Mom to a Child with Muscular Dystrophy

What thoughts went through your mind when your child was diagnosed with muscular dystrophy?

The same doctor who attended to our other son during his illness with a brain tumour attended to our second son, born soon after the first son died. When our second son was diagnosed with MD at 9 years of age, we were shocked but had never encountered anyone with that sickness, so it was very much wait and see. The doctor told us what to expect and the prognosis was not very good. My son just celebrated his 45th. birthday and is now in a wheelchair. He has 2 carers every morning. His strength is slowly becoming less but he is still able to do many things. Not physical but things like writing for instance, which gives him much pleasure. He is also married to a girl with 2 children.   

How has your child's diagnosis impacted your role as a mom?

Not much change in the beginning but once he was wheelchair bound his care became more intense. We found that it was very helpful to give him exercises in the morning. Not too strenious because that would have the opposite effect. So as a mom it became more difficult to go out or on holidays. Which was difficult for me as I was a pastor of a church.

What do you want to share to other MD moms?

Our greatest strength has been the ability to pray for and with him and share my faith with him. So that he can also have a hope and a future. That has helped him enormously!

Without that he would possibly have deteriorated quicker and would have been leaning towards hopelessness.