Action Duchenne Residential Weekends: “Adventure is still possible“
With a Duchenne diagnosis, it often feels that there is an ever-growing list of things that become more difficult. The freedom to choose to take part in activities, to continue hobbies or even just to pop round to a friend’s house changes into something that needs planning, thought, and adaptation. Even then, the reality is that not everything is possible.
Our residential weekends for children and young people living with Duchenne aim to challenge this. For three days, they take part in adventurous activities specifically designed for people with disabilities in a completely accessible centre, alongside others living with Duchenne and their parents and carers.
A Community of Gathering
“It’s the first time we’ve met any families with children with the same condition and it’s really helpful for us as well as him.” Jade, Duchenne Parent
Because Duchenne is rare, coming across others with the same lived experience is often challenging and feelings of isolation are common. Creating an opportunity for families to connect with each other is vital, and the importance of this for the young people and for their parents and carers cannot be underestimated.
It’s in the encouragement they offer each other during the activities, the laughter as they get to know each other and in the quieter moments in between where a shared understanding of something so fundamental becomes the start of a friendship.
“It’s just means so much. So much is a lot of bonding time with other families who totally understand, who get it. You don’t have to explain anything. Everybody’s been on different experience or had different experiences at different stages. We can all just chat and feel comfortable in discussing anything that we would like. So it’s a real community of gathering.” Karen, Duchenne Parent
Facing Fears Together
When day to day activities become more difficult to access, the idea of doing a zip-wire, getting in and out of a canoe or abseiling down a wall seem impossible. Being able to take part in activities that others take for granted is part of the magic of this experience.
“For Hayden to get the chance to do things that other kids do, which doesn’t happen often, and the fact that he can do such adventurous things and so safely is amazing for us. That it’s just so nice to be doing stuff that other kids get to do without, you know, without really even thinking about it.” Dawn, Duchenne Parent
Fears are faced and boundaries are pushed. For some, it’s going up a steep slope in a power chair and for others it’s going on the zip wire or the wheelchair obstacle course. Archery which has been adapted for differences in arm strength gives a level playing field for lighthearted competition. There is power in peer to peer support as they try things together and encourage each other through the nerves. For children and young people who have become used to losing abilities and being counted out of mainstream activities, to achieve things they thought they couldn’t means so much.
“Seeing the children’s faces and the young adults faces when they conquer something that they didn’t think they could conquer, like the zip wire. My son couldn’t do it last time when he was at an outdoor centre and he did it this time, and did it twice. It is just an amazing experience.” Karen, Duchenne Parent
Fun and Adventure
As well as the activities during the day, there are shared meals, a chance to swim together in a warm pool with the right changing facilities, a games room which turned into a disco for the last evening. Many of our parents talked about how rare it is just to have the chance to have fun, to put down day to day life for a few days and enjoy time together, safe in the knowledge that their lives are understood.
“The community of parents has been really lovely to see everyone chatting, engaging and just having a nice weekend away with loads of fun and so good for them to enjoy seeing their boys having a fun weekend.” Hayley, Action Duchenne Support Officer
Our residential weekends are three days of fun without barriers, three days of connection, adventure and friendship. They allow families to create memories to treasure, and to take away the strength and hope that comes from knowing they are not alone.
“Without organisations like Action Duchenne, many families affected by Duchenne would never get the chance to access experiences like this — experiences that build confidence, create precious memories, encourage independence and remind our children that adventure is still possible” Karen, Duchenne Parent.
Can you help us to give hope and strength to more families facing Duchenne? Become a Friend of Action Duchenne today to make sure that we can be there for EVERY family, EVERY time.
Find out more about our NEW online sessions for children and young people, and make sure you’re signed up to our monthly newsletter so you’ll be kept up to date with all our activities.
