When we first received the diagnosis of facioscapulohumeral muscular dystrophy (FSHD) for our twin boys, we were desperate to talk to other parents about their experiences. We wanted to gain insight into what to expect as the condition progresses, as well as ideas on what had worked for other families that might help our sons.
“Getting peer support from other parents has been invaluable and helps us feel we’re not alone in facing this diagnosis. It’s hard to explain just how reassuring it is to chat to other parents who have an understanding of what your family is going through, because they’re facing the same thing.
“We’ve found real strength, support, and made some life-long friends through the connections we’ve made and I’m excited to know that MDUK is encouraging other parents to come together to establish some formal parent support networks.
Kerry Spink, mum of Oscar and Seb
Kerry, and other parents who’ve been to our virtual Muscle Group meetings, have told us how valuable they found it to meet other parents in similar situations to theirs. And how challenging it can be to meet other parents locally.
So last year, we brought together a group of parents of children of different ages and with a variety of conditions, to talk about how best to bring parents together. One of the ideas that came out of that was to have a Facebook group just for parents of children living with muscle-wasting conditions. A supportive space where they could ask questions at any time and receive advice and guidance from others who have had similar experiences, and instantly connect with other parents from across the UK.
This group is now live and ready for parents to join. It’s open to anyone with a child living with a muscle-wasting condition, no matter the age of your child or how recent the diagnosis. While personal circumstances and experiences may vary, the challenges are often similar.
We have four fantastic volunteer moderators, without whose support we wouldn’t be able to create this community. The moderators all have children living with muscle-wasting conditions, and are there to make sure our group is a supportive, friendly and safe space for all parents. You can join the group at https://www.facebook.com/groups/mdukparentsupportgroup
Along with the Facebook group, we hope to host Zoom meetings for parents, which will be both an opportunity to chat informally with other parents and to hear from speakers on key topics of interest. Again, it’s our group of fantastic parent volunteers working closely with us who are making this happen.
If you have any questions about our new parent support group, please get in touch with our Volunteer Engagement Manager, Calley Clay on firstname.lastname@example.org.