A family are constantly fighting to ensure that their disabled son can live his life to the full.
Father-of-one, Satish, 66, and his wife, Rita, 67, provide 24-hour-care for their son, Vinny, 32, who was diagnosed with Duchenne muscular dystrophy aged three. The progressive condition impacts his daily life, as he’s totally dependent on another person to help him shower, dress, and care for his every needs.
A group of people standing around a person in a wheelchairAI-generated content may be incorrect.
L – R Satish, Vinny and Rita Vyas – Credit: Muscular Dystrophy UK
Before Covid-19 the family had full-time carers. Due to Vinny’s complex care needs it was difficult to find the right carers during the pandemic. Satish and Rita have been providing around-the-clock care for Vinny ever since and his overall health has remained stable.
Due to accessibility restrictions they’re often not able to get outside the family home, in Hounslow, Middlesex, to visit friends and family. Despite Vinny using an electric wheelchair and the family having a mobility vehicle they can feel trapped.
Satish and Vinny
The Vyas family talk about their accessibility fight – Credit: Muscular Dystrophy UK
Satish said: “The biggest challenge is integrating Vinny with the community because there are many obstacles, like accessible transport. Everything has to be pre-planned, as the chances are, places just won’t be accessible. It’s frustrating for us, as a family, that we can’t ever do anything spontaneous.”
The family star in a charity film by Muscular Dystrophy UK, the leading charity for more than 110,000 children and adults in the UK, living with one of over 60 muscle wasting conditions. Following the launch of the charity’s 10-year strategy, its vision is to create a world without limits for people with muscle wasting conditions.
A world without limits: our ten year strategy
The Vyas family star in a world without limits: our ten year strategy video by Muscular Dystrophy UK
Over the next decade the charity will focus on four key areas:
Transforming diagnosis – helping speed up and improve the accuracy of diagnosis
No one faces their journey alone – reaching everyone with information and support at the point of their diagnosis and being there for them at every stage of their journey
New treatments, universal support – helping accelerate the development of new treatments for every condition and quicker and easier access to specialist support when and where people need it
Living your life to the full – campaigning for a more equal and accessible world and supporting more people to live independently with better physical and mental health
The family is urging better awareness and understanding of muscular dystrophy with healthcare professionals.
Satish added: “If the GPs had better knowledge of the condition, it would make life a lot easier for us when they’re trying to refer Vinny to hospitals for appointments, as quite often the wrong information is relayed and the hospital don’t have the right facilities.
“Vinny was recently referred for a scan by his GP. We got to the scan, and they looked at him and said “Oh, you’re in a wheelchair. We don’t have a hoist.” The appointment was cancelled, and the GP’s suggestion was to book patient transport to take Vinny to and from the appointment on a stretcher. There’s no way Vinny can lay on a stretcher for that length of time, so we had to go to our specialist hospital instead.”
Andy Fletcher, Chief Executive of Muscular Dystrophy UK said: “Living with a muscle wasting condition affects every part of life – and the impact goes far beyond the physical. Society too often shuts people out – with barriers in housing, education, work and transport that makes independent living harder than it should be.
“That’s why over the next decade, we will campaign for a more equal and accessible world, supporting people to live independently with better physical and mental health. The time for change is now.”
Discover Muscular Dystrophy UK’s 10-year strategy: musculardystrophyuk.org/our-strategy.
