A Grandmother’s Story of Support

Hilary’s grandson is 9 years old and has Duchenne muscular dystrophy. After seeing the way his condition changed since first being diagnosed, Hilary’s daughter, Emily, decided it was time to apply for Disability Living Allowance (DLA) to help receive the support the family needed.

The Department for Work and Pensions failed to understand Hilary’s grandson’s needs and made the decision not to award either the mobility or the daily living components of DLA.

This decision was devastating for Hilary’s family, especially after they learned that health professionals had not been contacted for further information.

Muscular Dystrophy UK’s advocacy team helped support Hilary’s family through the appeals process, providing guidance and a supporting document to argue against the decision. Within minutes the panel awarded the highest rate for mobility and middle rate for care. Hilary’s family can now have the Motability vehicle Hilary’s grandson needs to get around.

“Don’t despair and never give up”

Hilary said referring to the case.

“It would have been so easy to lay down and just give up when appeal after appeal was turned down without them gathering any medical evidence. Having to go through the appeal was very frightening but it’s not the end of the world and we won’t give up. You just have to keep going. “

Hilary is in the process of joining Muscular Dystrophy UK’s peer support network. Hilary understands what it is like to be without support and to have nowhere to turn.

When asked why Hilary wanted to become involved in the peer support network, she responded:

“I wanted to do peer support because I didn’t want anyone to be in a position I had been in, not knowing anything, not knowing where to go…Not having a human approach.
You can read about it as much as you like but it’s different when you are living it.
In the beginning, we had no idea where to go, or who to go to. We knew that Muscular Dystrophy UK existed but we didn’t know in what form they could help us.
It was a very lonely and dark time, having just received the diagnosis and not really realizing what was available and how to access it.
I didn’t want any other grandma to feel as helpless as I felt, because I couldn’t support my daughter. It is very difficult, as a mum you want to be able to do everything you can to help.
I didn’t know how to help her through it.”

Hilary joins the peer support network next to other parents, family members, and individuals affected by a muscle-wasting condition.

Are you a grandparent of someone with a muscle-wasting condition, like Hilary? If you want to speak to someone who understands, get in touch with us today on our helpline: 020 7803 4800 or info email: Info@musculardystrophyuk.org

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