15 year old Lymm High pupil Jonny Barber, who has Duchenne Muscular Dystrophy, a deteriorative muscle wasting condition affecting mainly boys, came to Westminster last week to meet his MP, David Mowat for afternoon tea, talk about his aspirations for the future and the challenges he thinks he will face in trying to achieve them.
Jonny part of Action Duchenne's Lottery-funded Transition to Adulthood Programme called 'Takin' Charge' which is helping those with Duchenne think about the future and develop important skills through an exciting programme involving workshops and an online e-portfolio. The group have been learning new skills such as martial arts and film animation as well as developing their ability to use IT and social media.
Until recently, Duchenne Muscular Dystrophy denied all young people living with it the chance to reach adulthood and the average age of death was late teens. However, now with the correct care and medical management through the use of steroids, cardiac management, spinal surgery and night time ventilation, these young people are living into their late twenties, thirties and beyond.
'These are exciting times' says Dr Janet Hoskin, Manager of the Takin' Charge Project. 'Research is now showing that if young people with Duchenne are given good care and medical support they should be able to look forward to adulthood. This means they need to develop the skills to make good career choices and to live as independent adults.'
Jonny, his Dad, Nick Storer and his older brother Ben travelled to Westminster to attend this event.
Nick said: 'We wanted to tell David Mowat how important it is that Jonny continues to receive good health, social, educational and employment support as he moves into adulthood. It seems that children are relatively well supported, but that it is much harder for a severely disabled adult to gain the assistance that they need to enter higher education and move into employment."
Jonny said: "I joined Takin' Charge mainly so that I could meet other boys in the same situation as me. It has been good and already I have been wheelchair abseiling and climbing with a new friend. I am going to Westminster so that I can explain to my MP that I hope to go to University and at the moment think I would like to be a statistician.
"By then I will need full time personal care, but I don't want this to get in the way of what I can achieve.
Ben said: "I want my brother to have the same opportunities for higher education that I have. I have just left Lymm High School and will be going on to University. Jonny is at the same school and has the same aspirations."
Following the meeting David Mowat commented:
"I was delighted to meet Jonny and to find out more about this debilitating condition.
"Jonny is clearly a bright and intelligent young man who is determined not to let his condition stand in the way of what he wants to achieve. I wish him well for the future."