Help Samy Achieve His Dreams

This is about Samy QS. Samy is 32, a composer and former guitarist. A man who has achieved so much despite being diagnosed with Duchenne’s Muscular Dystrophy at the age of 12. Duchenne’s Muscular Dystrophy is a muscle wasting condition that causes progressive muscle weakness. Samy requires twenty-four hour care to go about his daily life; to get in and out of bed, to wash, prepare food and drink, administer medication and so on. But his story is one of resilience and determination. Training initially as a guitarist, as that became more difficult he focused solely on composition, using the computer to write incredible scores and creating a body of work that allowed him, after much planning and saving, to realise a life-long ambition. Last year he left his home in France, moved to London and began a life-long ambition to study for a Masters degree in Composition for Film at the Royal College of Music.

All of this is now in jeopardy. Sudden, unexpected changes and associated costs mean Samy is at risk of having to quit his degree course. It comes down to the cost of care essential for Samy live his day to day life, and fully accessible accommodation with rooms for both Samy and his carer.

For many years Violette worked as Samy’s carer. Nearing retirement herself Violette wanted to finish her career helping Samy through this life changing experience and moved to London with him. Then unexpectedly her own health issues forced her to retire leaving Samy without any care just as he was about to start the second and final year of his degree. The good news is that the French government will pay the salary of a replacement French carer (not a British carer) but this takes time. Someone must be found who understands Samy’s specific needs and is also prepared to move to the UK for a year. Then specific visas for the carer must be applied for. This takes time. Faced with this situation Samy has had to move back home. However, Samy’s student visa only allows him to be out of the UK for a short and limited time before he forfeits his right to return at all. Samy therefore needs to return by November to retain the visa. His only choice therefore for this interim period, between his return to the UK and when a new French carer can join him, is to pay for UK based private care. For Samy’s needs, these prices start at around £1,600 per week.

Losing Violette also changed Samy’s accommodation requirements. Fully accessible accommodation can be expensive with limited availability in an already expensive London market pushing rents even higher. For his first year Samy was able to rent a one bedroom apartment; Violette’s kindness and their many years working together meant she was prepared to sleep on a sofa bed, helping keep costs down. But private care companies, and a new carer will rightly require their own bedroom meaning that Samy’s accommodation costs, already high, just got higher, an estimated £400 per month higher.

Samy saved and planned for many years for this course, even deferring starting his degree for a year to give himself more time to prepare. These costs are difficult to meet and for us, his friends, heartbreaking to witness.

But people are backing him. His university is helping as much as they can along with other institutions aimed at disabled musicians. However, it leaves him still needing to find £20,000 to fund what he requires to finish his degree. With your help, Samy will be able to pay for good care, to afford fully wheelchair accessible accommodation where he can live and study along with all the extra expenses that come with living a life with Duchenne’s Muscular Dystrophy. He will be able to finish his Master’s degree and complete the journey alongside the friends and colleagues he started with. And he will be able look forward to his career ahead of him. He has never let his condition stand in his way and with your help he will continue to realise his full potential. Your contribution will make a huge difference.

Thank you for reading and being a part of Samy’s extraordinary journey.