No one has ever asked me what I want to do before - Young person living with Duchenne

Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19  years. It was shortlisted for the 2016 National Lottery Award for Education. 

Thanks to interventions such as steroids, cardiac monitoring, night ventilation and spinal surgery young people with Duchenne are now living into their twenties and thirties and beyond. In Denmark where care is optimum there are now more adults living with the condition than children.  It’s therefore crucial that we are all supporting our young people to be as independent as possible and to help them develop skills to get the best quality of life as adults.

The Takin’ Charge programme provided aspirational information for boys and their families about the choices available beyond school, including  further education, training and/or employment options, independent living including housing options, the impact of good health care provision including the importance of advice on  sexuality, health and relationships.  

Young people completed an e-portfolio that recorded all of the challenges that they have undertaken in our  face-to-face  workshops across the year, and/or independently at home or school. They received a qualification that is accredited by ASDAN and forms part of the Certificate of Personal Effectiveness.  

The project also gave young people with Duchenne the chance to develop friendships and learn new skills such as animation, music and computing, and to gain the confidence to speak up for themselves when talking to their Members of Parliament or organising fundraising events. 

Through the support planning she has done with Zak and our family we have been able to identify some very clear outcomes that will ensure Zak has access to education , training opportunities as well as social interaction. - Vici Richardson (Parent) 

In addition the project also worked with other people affected during the transition years.

(1)  Parents: ‘Letting Go ‘ project – provided information parents with the information they will need to support their young people to be more independent in adulthood.

(2)  Siblings: ‘What about Us?’ project -We ran sibling workshops for younger siblings and older sibling s including specialist advice from a geneticist on the implications of being a carrier of Duchenne Muscular Dystrophy

(3)  Adults living with Duchenne 19 years + – This group helped to develop and monitor the project through our steering committee and through co producing and facilitating workshops. As older men living with Duchenne they are inspirational role models for younger people. 

Action Duchenne 10 top tips for transition for young people living with Duchenne - groundbreaking leaflet produced supporting the lottery-funded award-winning Takin' Charge project

Animation project

One of the challenges Takin' Charge took part in was to work with a group of postgraduate animators from Central St Martins Art School in London.  They produced this short film that gives advice to younger children who have Duchenne on how to have the best life possible.

Working with Celine has been invaluable to both Jack and myself. Prior to working with Celine, Jack had a very unsatisfactory EHCP which was very basic and did not plan for Jack’s future. Working with Celine informed not only myself, but also Jack’s SENCO and the LA SEN officer of the importance of ensuring that Jack’s ECHP included details of Jack’s goals of the future and to set short, medium and long term objectives to make sure these goals can be achieved. - Lindsay Maxwell (Parent)

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