Young people living with Duchenne and their families start planning their future with ‘Takin’ Charge’
Action Duchenne’s new lottery-funded project for young people with Duchenne going through Transition to Adulthood was launched at this year’s international conference. ‘Takin’ Charge’ will enable teenagers with Duchenne to learn important skills and plan for what they want to do in the future. Highlights of the weekend included a ‘The Exon Factor’ Quiz Show with top Quiz Master Neil Williamson, Transition Co-ordinator from Richard House Hospice. This prepared the young people for their ‘Panel of Experts’ where they were able to ask questions of Professor Steve Wilton from the University of Western Australia, Dr Ros Quinlivan and Dr Anton Emmanuel from Great Ormond Street Hospital as well as three older men living with Duchenne Dr Jon Hastie, Mark Chapman and Stuart Hatton.
Dr Janet Hoskin, manager of the Takin’ Charge Project said, “It was fantastic to see so many young people taking responsibility and asking meaningful questions as well as having a lot of fun!”
Sensei Michael Joseph showed boys how Martial Arts could play a role in keeping fit and healthy in another workshop, and Linda Jordan and Ingrid Clark from the National Development Team for Inclusion shared with young people and their parents how to make plans for the future in order that our young people can live aspirational and independent lives. Celine Barry, Takin’ Charge project co-ordinator said, “Through the project we hope to equip young people to plan their lives effectively in order to get the best outcomes for themselves and their families. The session with the NDTI made it clear that having a plan is key to getting what you want for the future.”
On Saturday morning the ‘Takin’ Charge’ group went to Camden City Learning Centre to learn how to use the specially designed e-portfolio with the help of IT consultant Mary Rebelo and Danny from the software development company Just2 Easy. In the afternoon, Paul Casey from the Family Planning Association led the afternoon session ‘Let’s Talk about Sex’.
Brothers Aaron and Jack Ebanks have already put their new found skills, gained during the conference, to good use. Aaron, aged 15, spoke up for himself during a recent day surgery to have a calcium injection, when he informed the doctor performing the procedure that she should use a baby sized cannula. Aaron’s request was eventually conceded leading to a successful treatment.
His brother Jack, aged 13 has recently taken delivery of his new powered wheelchair. However, the chair has been restricted because Jack has not yet received his powerchair road test. Jack asked the physiotherapist at school to contact Wheel Chair Services about this, and as a result has been given an early assessment within the next week.
Father Wayne Ebanks, when asked about the Takin’ Charge programme said; “We are in this for the long haul and sometimes it can feel quite lonely. Getting together with others in the same situation can be very empowering and sharing experiences with others really helps. Everyone needs a helping hand once in a while, no matter how strong you feel. The Takin’ Charge programme has had a great effect on our whole family, it is a joy to see Aaron and Jack taking control and speaking up for themselves regarding their treatment and services. Thank you to everyone at the Takin’ Charge programme.”
As well as working with teenagers living with Duchenne, the Takin’ Charge project aims to help parents be involved and empowered through Person-Centred planning, in order to support their child’s aspirations for the future. Action Duchenne has a number of families who are interested in hosting and attending local regional workshops that will look at best ways of planning individual budgets that will lead to best outcomes for young people. In addition, the ‘What about Us’ project is working with siblings of young people with Duchenne – on Friday Kay Carpenter the sibling worker from Richard House led an afternoon for siblings, enabling them to have fun but also think about issues related to having a brother with Duchenne.
Great fun was had by all!