Patient Stories - Duchenne Muscular Dystrophy
Here below you can find the testimonials from five families affected by Duchenne. We hope that these stories can inspire you, comfort you or help you understand more about this disease. We are very thankful to all families for sharing their stories with us.
Living with Duchenne Muscular Dystrophy
-
Johnny & Wanda - parents of Stan
Johnny has his own company that sells production robots. Wanda works for an organisation that provides employment for men who have a mild mental disability. Stan is now seven years old. He was not diagnosed with Duchenne Muscular Dystrophy (DMD) until he was five.
"When will the doctors find a pill for my sick muscles? I want to be able to jump again."
-
Teun & Esther - parents of Thomas
Thomas has cute curly blond hair and piercing blue eyes. Nothing about this happy little guy would make you think that he has Duchenne Muscular Dystrophy (DMD). ‘And that’s exactly the way we want to keep it for as long as possible,’
"DMD immediately makes you once again realise what is and isn’t important in life."
-
Jo & Ilse - parents of Maarten
Jo Rooseleers and his partner, Ilse Vanhoolandt, live in the rustic village of Kaggevinne near Diest in the province of Flemish Brabant in Belgium. Everyone knows the family and their children, but especially Maarten is well known around town.
"At school, they would do anything for him. All of the children in his class are his personal bodyguards."
-
Janneke - mother of Jayden
The date 12 March 2007 will forever be ingrained in Janneke Hendriks’ memory. ‘That’s the day we heard Jayden has Duchenne Muscular Dystrophy (DMD). My life has been tough from that moment onwards.’ Janneke Hendriks brushes away a tear.
"I don’t want to raise him in an overly protective environment."
-
Dree & Margot - parents of Bram
Bram is an enthusiastic drummer. In his bedroom, he is pounding his drums with life-crashing force. He takes after his father, Dree, who caused a stir with the Dutch percussion band Slagerij van Kampen. It’s obvious that Bram inherited his musical talent from his dad.
"Mum, will I ever ride without training wheels?"
