Salma Akram's story

Life's easier when you know what to expect

None of us know what's around the corner, but my life, and my youngest daughter's life, could have been so much easier if we'd known what was ahead.

I've never written one of these letters, but before I carry on I think I should introduce myself. My name's Salma Akram and I'd like to tell you about my daughter, Zainab.

In many ways, Zainab is like any other five-year-old girl. She loves playing with her older sister, Laila, colouring in, watching CBeebies and reading stories. But Zainab has a life-limiting condition called congenital muscular dystrophy, and that makes her childhood a bit different - she also loves her standing frame and her powered wheelchair. They make her feel independent and like a 'big girl' because, without them, she can't move around on her own.

You can help make life easier for families like mine, by sending a gift towards vital research that the Muscular Dystrophy Campaign is funding. It's hard for me to put into words just how important your support is, but I know I need to try...

You can help make sure parents like me aren't left in the dark

Zainab was six months old when she was diagnosed with congenital muscular dystrophy. 'Congenital muscular dystrophy?!' I had no idea what that was, or what it meant for my baby. The consultant gave me a factsheet, but I was so overwhelmed that I couldn't take it all in. It was such a scary, confusing time. And I didn't even begin to get my head around it until Zainab was a year old, when we moved to Sheffield to be near my family.

When we got there, I was lucky enough to find a consultant who referred me to an incredible woman called Julie. She's a Care Advisor from the Muscular Dystrophy Campaign - and the first person to really tell me what I could expect and how this horrible condition could affect my daughter.

But I was lucky. You see, there are different kinds of congenital muscular dystrophy (I think it's around 14 types) and we don't know much about some of them. So, there are parents who can't find out what symptoms their child will develop, or how severe their condition will be.

Just think of all those worried families who are in the dark right now. It's a terrifying place to be - and they shouldn't have to be there. And you can help change this, by supporting some very important research at the Muscular Dystrophy Campaign.

You could change life for families like mine

One of the projects is headed up by Professor Francesco Munton. To make sure parents know what their child's future will hold, the professor needs to look into the way genes change or 'mutate' and cause all the different kinds of the condition.

This is really important because these changes can take place in lots of different genes - and that's why symptoms vary between children. So, by finding all the causes or 'mutations' parents will get a better diagnosis. Having this crucial information will help them plan ahead - and do the very best for their child.

But there's more....

You and Professor Muntoni could even save lives

By identifying the 'genetic mutations' responsible for congenital muscular dystrophy, Professor Muntoni is also taking the first step towards developing a treatment. Although Zainab is a happy, bright little girl, I can't escape the fact that her condition is life-limiting. And again, we are the lucky ones. Some children with this kind of muscular dystrophy don't even make it past their first birthday.

So this research could mean real hope for me, Zainab and Laila - and for all the families living with muscular dystrophy, now and in the future. And when you are the parent of a seriously ill child, you have to have hope.

You can give us that hope. Just £35 from you today could fund another hour of amazing research. So please, send whatever you can afford to help Professor Muntoni and the other scientists, searching for answers, treatments and cures, continue their vital work.

With heartfelt thanks,