“This research makes the difference between light and dark, between day and night.”
Dyanneke’s greatest fear comes true when she enters the Leiden University Medical Center a few months after Hidde’s birth. “August 7, 2007”, mumbles the native born Limburger with a somewhat glazed look. She remembers that defining moment in the hospital.
“We went to the pediatric neurologist and our lives changed forever. He outlined that the muscle disease meant our son being in a wheelchair or worse. The message was: most children with this condition pass away in the first two decades of their lives. What followed was total upheaval. After receiving that message the hours passed me by in a haze. No idea how I got home. ”
While Hidde’s care was initially the same as that for all other babies, the limitations and worries actually grew with each passing year. Because where other children run or play sports, Hidde fell behind. “When he went to primary school, I was very worried that he would be bullied. For a long time he had a dream: he wanted to become a goalkeeper at MVV. At school, all the children were allowed to write their wish on a note once. The teacher showed me his wish: “I want to walk”. Devastating to see he wanted something he wouldn’t be able to do, it hit me to my core.”
This is why Dyanneke and her husband work very hard to raise money for scientific research. The family raised tens of thousands of euros for Stichting Voor Sara. The foundation signed a contract with the Maastricht university for research Hidde’s muscle disease; MDC1A. It is one of the muscle diseases (research?) that benefits from the GYM project. GYM, or Generate Your Muscle, aims to develop and commercially produce stem cell therapy for the recovery of muscle mass and strength in patients with muscle diseases or muscle deterioration. The project is a collaboration between five leading universities from the EurMaas region: Maastricht, Leuven, Liège, Aachen and Hasselt. A team of the best scientists will be working on finding a treatment for Hidde and countless other patients in the coming years thanks to a European million grant from Interreg.
“This research will make all the difference in the world. I am convinced that this muscle disease will be a thing of the past sooner rather than later. What this means for Hidde? I have no idea. It would be fantastic if Hidde could take a few steps some day, but that is so far removed from our reality right now that it’s not my main priority right now. For now I count my blessings and I am happy with every day that Hidde is doing well. ”
Read an article in the Dutch newspaper De Limburger here: Volle spierkracht vooruit voor Hidde – DDL 26-02-2021