Blog written by Lizzie Deeble | Project Engagement & Support Assistant | Duchenne Mum
Yes I Can is our pilot transition programme, put together after careful consultation with collaboration with Demelza Hospice. We designed our project around the responses from the young people we surveyed, noting the unmet needs and the identified gaps in support.
We identified that much of the transition to adulthood for young people living with Duchenne muscular dystrophy takes place in the clinic and is centred around the move from paediatric to adult care. The clinic has its place, but it doesn’t give young people the environment through which to build social connections, develop confidence or reduce feelings of isolation. Our innovative ‘Yes I can’ programme combines residential weekend experiences alongside expert-led online sessions to empower, support and inspire young people living with Duchenne.
We launched ‘Yes I Can – Seizing Control, Empowering Adults by Transforming Transition’ on the 8th June with the first of 12 online Zoom sessions. We’ve had different expert speakers share their lived experience at each of the sessions, complimented by lively discussion from the young people attending.
Our session on living independently, delivered by the Pathfinders Neuromuscular Alliance, gave our group information and advice. It also looked at how to overcome the inevitable barriers from the point of view of those who have been there and done it. We have had Linda Ball, a Duchenne mum who has trained to be a specialist disability driving instructor and now works as an advisor to the RDAC, enabling many more people with disabilities to gain their wheels! Driving is yet another part of gaining independence which can seem full of complications and insurmountable challenges for those living with Duchenne. This session, however, was full of excitement and enthusiasm from both Linda and the young people attending. It was supportive and informative, with Linda’s passion for getting everyone behind the wheel coming through the screen.
In another online session, Festival Spirit, an amazing charity who work to enable those living with disabilities to experience festivals, came along to tell us about the work they do. In the same session we welcomed James Parkin, who lives with Duchenne, to share his passion for travel and his tips for independence. He also introduced us to his fantastic YouTube channel. Most recently, we had Andrew Duffy,who also lives with Duchenne, to chat to us about how his achievements in the performing arts have empowered him and enabled him to live more independently. Other members of our groups shared their tips about confidence, which we know is a challenging area for many of our young people.
As a mum to an 8 year old who lives with Duchenne as well as being a new member of the team here at Action Duchenne, I have found these sessions inspiring and uplifting. To hear young people share experiences of driving, going to festivals and performing at the Edinburgh Fringe Festival challenges all of the preconceptions about what people living with complex health conditions and disabilities can achieve and the lives they can have. It has made me realise how many of these preconceptions we all carry without even thinking about it.
The Yes I Can online sessions are not “just” about celebrating achievement though. They are a safe and supportive space for young people to feel understood, to forge friendships and social connections, to share with others who face similar challenges and to increase their belief in what is possible.
If you’re aged 14 to 25 and living with Duchenne, come and join us for the rest of the programme – we’ve got Pathfinders helping us navigate how to recruit and manage PAs, we’ll be looking at accessible travel, hobbies and much more. We’d love to see you there!
Conference agenda
