Welcome everyone to our 1st Blog: ‘respite weekends – part of our healthy approach’
Historically, the weekend breaks have provided families with resources to connect, learn new things, take respite and talk through the many challenges with this rare disease. The trust hosts a 3-night short break in different parts of the UK annually and it has created opportunities for new projects, and it’s a space for growth, resilience, understanding and new milestones can evolve. This mini holiday continues to offer much needed further provision so that families understand that this rare neurological journey is not a solo one. Children enjoy playing, being with friends, being creative, outdoor activities and true escapism with their families away from commitments, hospital visits and busy lifestyles back home.
Here are a few photos of our paddle-boarding activity in Dorset, Prestatyn, with Haven, whom we have partnered with for some twenty years.
Haven Respite Weekend DESST May 2026
“We would like to share with everyone that every year, at the end of May, we go on a trip to see all the other families that have the condition (children and adults), we have lots of fun on these trips away. We do many activities such as bingo, visiting the local communities, paddle boarding, visiting the beach if it’s a nice day and the sun is shining. Paddle boarding is a real big challenge, and as you can see in the photos, I managed to stand up for the first time, it felt amazing”.
Further quotes from members:
“From a parent’s point of view…..everyone is in the same situation and share experiences which is great and everyone understands each other”.
“We are a community of love, hope, strength, and support”.
“The breaks are somewhere I always fit in.”
We’ve appreciated Joe Wicks reaching out to us each year and sharing his message to the DESST weekend families AND also giving a shout out to those marathon runners which helped acknowledge their journey of resilience. Looking forwards: further respite opportunities for personal development, physical activity, having fun with the arts and health and nutrition education would be amazing.
Written together by Chair and members of the trust.
Karen Brain, Jo Brazier, Beth Brazier, Jennifer Woods-Mullins; Lily Sherburn.
Thank you to Lucy for setting up this space to showcase our stories.