This article is written by a Duchenne Mum, Ruth, about her experience with Action Duchenne’s peer-to-peer support.
When my son was diagnosed with Duchenne, my world changed, during the first few months I needed time to process everything, find the strength to live, work and be a mom.
Action Duchenne were there for me, I had the opportunity to talk to moms that had experience what I had, the sadness, the fear, the loss and the worry for a different future.
When I was ready, I asked Action Duchenne to put me in contact with another family in the West Midlands. They introduced me to Claire and her lovely family. Both of our boys are of a similar age.
We started chatting over WhatsApp, comparing our experiences, our children’s ability, hospital appointments, schools, we shared such personal details with great ease.
Face to face for the first time
Our first meeting was amazing, Claire, her husband Ben and son Harry came to my house, we all clicked. The boys were amazing together, neither speak but they had a silent understanding, they just knew they had someone in common. They followed each other around, Sat close together and played. We were all so happy to see it.
Me and Claire spoke about everything and anything. Ian and Ben chatted so easily together too.
We have stayed in contact, attending the boys birthday parties. We met for a Christmas activity and we are meeting for dinner without the children soon.
Having Claire in my life, gives me so much comfort, just knowing a have a person I can speak to, who “knows how it feels” as a mom of a child with DMD.
I’m so grateful for Action Duchenne for connecting families.
Ruth
Further information
- Read more peer-to-peer support stories
- Join us at a location near you, and meet other families at our Science Education Programme
- Receive news and updates from Action Duchenne below;
- Start a conversation with us. We can offer you the same kind of support as Ruth, just get in touch info@actionduchenne.org.