Muscular Dystrophy

John’s Story, Living with Muscular Dystrophy

The BBC documentary, Lifeline Appeal for Muscular Dystrophy UK, celebrates Jonathan Gilmour’s life at university made possible by the assistance of a Live-in Support Worker. Diagnosed with Duchenne Muscular Dystrophy at the age of seven, Jon has overcome major physical challenges to be where he is today, and the programme follows him as he completes his PhD final year at Cambridge.

With the help of Valentin, his Helping Hands Live-in assistant, Jon overcomes immense physical challenges every day. He says;

“Valentin makes a huge difference to all areas of my daily life. He is always flexible and has built up a great working relationship with me.”

Jon, with his great mind, concentrates on his studies while Valentin provides complex nursing-led care with ventilation support, cough assist and continence care. And of course, university life is still the same with social life at the forefront:

“As Jon’s main Carer I can say that our relationship is very good, and I think this is mainly down to me being a young, sociable person who likes to share my enthusiasm with others. Myself and Jon are near enough the same age, which allows us to share mutual hobbies such as music, movies and computer games.

In terms of Jon’s routine, I am very confident in the care that I am providing, meaning that he is confident and relaxed too. It’s extremely rewarding helping Jon with his life here at Cambridge. He’s completing a great PhD and I know that I have made a difference too.”

The Helping Hands fully managed service means that support is consistent across the academic year and during breaks, with customer control and open communication at the forefront of the Helping Hands’ planning.

Melanie Dawson, Senior Specialist Nurse at Helping Hands says:

“Carers are required to support every aspect of Jon’s life and needs, whilst allowing him the freedom to make his own decisions and pursue an active social life. Balancing the need to provide independence and achieve outcomes is difficult; thus, the relationship Jon has with his Carers and the management team at Helping Hands is fundamental to the continuing success of his care package.”

Contact our team of experts today if you like Jon have Muscular Dystrophy or Spinal Muscular Atrophy and would like support from someone like Valentin.

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