Changing the Lives of Patients with

Myotubular and Centronuclear Myopathies (CNM)

Meet Morice

What are his interests/hobbies
Morice likes to look at Paw Patrol and firefighter Sam. He also has plenty of toys from Paw Patrol and firefighter Sam. He loves all vehicles: trekkers, garbage trucks, fire trucks, police cars… just everything. Of course, he also loves motorcycles, like the dad. In summer, he likes to ride his wheelchair bicycle through the area. He likes to play with Lego and Playmobil. He likes to go to kindergarten and like to play with other children. And you can’t take away his iPad. He watches children’s series on the iPad, plays games and also plays with the Talker app.

How has CNM created challenges?
The biggest challenge at the beginning was acceptance. We had to understand and learn what CNM means to us. We had to deal with the disease. Life with a child is changing, as we all know. But how much life with CNM changes, we had to learn first. There are many hurdles to overcome. Friends had to learn that we are no longer so flexible and can’t be so spontaneous. Every small visit has to be planned carefully so that we have everything with us. We also have nurses who accompany Morice and monitor them at night. Our lives have become so different, but through Morice we have learned to appreciate it. Morice is a fighter, he has proven that to everyone several times and we fight with him. He has shown us that the small things and progress are important. And he makes us the proudest parents there are.

What has been a source of strength for the family?
We have received the greatest support and strength from our association ZNM Zusammen Stark e.V. It was only through contact with the club and its leader, Holger, that we learned a lot about CNM. And the exchange with other families in the club also gave us strength.

What are his parent’s goals for him?
We have the same goals as other parents have. Our child should have a beautiful and happy life. We hope for a therapy, so that Morice no longer needs a ventilator.

What are Maurice’s goals and hopes for his future?
He will certainly have the same desires as any other 5-year-old boy.