My name is Neeru Malhotra and I’m the Head of Information and Support Services at Muscular Dystrophy UK. My brother has Duchenne muscular dystrophy.
In 2009 he had a serious health crisis and spent two months in intensive care. This was a scary time for my family and we had so many questions, so much confusion and worry. There was a great deal about his condition that we didn’t understand.
That experience is why I do what I do now. I know the difference it can make just to speak to someone who knows what to say, and what to do. Someone who understands what you’re going through,
and what your loved one is going through. One of the core aims of Muscular Dystrophy UK is to be here for people – like my brother and my family – who might feel overwhelmed or frightened or
confused by a muscle-wasting diagnosis. We don’t want people to have to face things on their own.
On the helpline we speak to a lot of parents like Sarah and Sam (pictured with their family – you can read their story here), stressed and worried and looking for support and understanding. Some people call us in tears, having just received a muscle-wasting condition diagnosis and not knowing where to turn.
We hear from people who are confused or frustrated by the complex benefits system. We talk to parents, siblings, spouses, partners, boyfriends and girlfriends, and help address their concerns about someone they care about but don’t know how to help. We also get calls from teachers looking for advice on supporting students with muscle-wasting conditions.
We can only help all these people thanks to donations from people just like you. Your generosity helps keep us answering helpline calls, but you also help ensure the information on our website is as current and accurate as possible. You help us produce and distribute printed materials to anyone who needs them. You help us run a GP training module so that more medical professionals are better equipped to identify and give advice about muscle-wasting conditions.
All of this work is so important, so every day I am grateful to have the support of kind people like you.
One thing is certain: the coming year will see many more people suddenly thrust into the frightening and disorienting world of living with a muscle-wasting condition. There will also be thousands of families, just like Sarah and Sam’s, who will continue to need our help with conditions they are already living with. We want to be here for all of them.
Head of Information and Support Services
Muscular Dystrophy UK
Thank you, for anything you can give this Christmas. Your generous gift will help us be here for everyone who needs us in the year, and years, ahead.