Living with limb girdle – the Lloyd family

Forty-year-old Hayley Lloyd lives in Rugby, Warwickshire, with her nine-year-old son Tommy. Tommy has a muscle-wasting condition called limb girdle muscular dystrophy. Over the last three years, Hayley has thrown herself into fundraising for Muscular Dystrophy UK – taking on a sky dive and a half marathon to name just a few. Hayley talks about Tommy’s diagnosis, and the amazing fundraising challenges she has faced:

Tommy was diagnosed with muscular dystrophy on the 1st September 2012. I’ll never forget that day, or how little Tommy looked on that hospital bed when the consultant told me he had a muscle-wasting disease.

I remember the consultant saying normal people have a creatine kinase reading of about 100, and Tommy’s is 36,000. He explained to me this was a muscle enzyme released into the blood stream where there’s muscle damage.

I didn’t know what he meant by muscle-wasting disease, but I knew how serious it was with Tommy’s creatine kinase reading. I asked what medication or operations he could have, but I was told there were no treatments, and no cure.

My world fell apart that day. I didn’t know Tommy’s life-expectancy or what his quality of life would be.

I spent the next few months in total and utter shock. How could this be happening to my child? It was so hard coping with his diagnosis. I had already separated from Tommy’s dad – I was a single mum trying to carry on as normal, knowing that I had to come to terms with my grief. I felt helpless not being able to help my little boy – all any mum wants to do is protect their children, to make everything better, but I couldn’t.

It took 18 months to diagnose what type of muscular dystrophy Tommy had. It was a long and arduous process. Secretly I hoped they’d got it wrong, and I clung on to the hope the results would come back saying Tommy was ok.

When the results were confirmed, Tommy was diagnosed with limb girdle muscular dystrophy Type 2E. Muscular Dystrophy UK supported me from the start, helping me cope with Tommy’s diagnosis.

We’re lucky Tommy can still walk at the moment, although he has had a few falls and struggles with the stairs and bath sometimes. We are always positive and carry on regardless.

I decided I needed to do something for my son, so I started to fundraise in the hope that any money I raised would help fund research into treatments and cure.

Last year I decided to jump out of a plane! I was terrified, but I wanted to show Tommy you could do things you were scared of, things that you thought were impossible. Four friends jumped with me and I managed to persuade George from Channel 4’s Gogglebox to jump with me as well. I had originally contacted him on Twitter to ask if he’d go on a date with me if I raised £2,000 for Muscular Dystrophy UK. I couldn’t believe it when he said yes, and that he would jump with me if I raised £3,000.

Within two weeks I’d raised £2,000 and within four weeks I’d hit £3,000, so George jumped with me, about three weeks after he left the Celebrity Big Brother house. Last year I managed to raise £6,500 to support families living with muscle-wasting conditions.

This year fundraising continues! A couple of months ago, Tommy sat in a bath of beans in our local Tesco store, raising hundreds of pounds for Muscular Dystrophy UK. I’m taking part in a half marathon soon. I was terrible at running at school, always the last one round the field, so I always knew this would be really hard for me, but I am enjoying the challenge.”

Find out more about limb girdle muscular dystrophy and how Muscular Dystrophy UK supports families living with the condition

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