Living with BMD – Leanne Gateley

Thirty-seven-year-old Leanne Gateley is an HR Manager from Radcliffe, Manchester. She lives with her two children, Max, 5, and Amy, 2. Max was diagnosed with Becker muscular dystrophy three years ago. Leanne talks about Max’s diagnosis, and how she has thrown herself into fundraising to help beat muscle-wasting conditions:

I started to notice Max was missing milestones when he was about six months old, but the health visitor kept assuring me that he was ok. I had a gut feeling that something wasn’t right, and when Max was nine months old, I took him to see our GP who started running various tests. It was confirmed that Max had a development delay, but they could not find an underlying condition that was causing it.

“In April 2013, out of the blue, I received a call from our consultant asking me to visit the genetics department the next day. I remember feeling really scared. I was told that a doctor sitting in on one of Max’s child development appointments had suspected muscular dystrophy from the way Max was moving, and  had asked for his blood to be re-tested.

I got the diagnosis that Max had a muscle-wasting condition when I was seven months pregnant with my daughter. When I received the news, it was like I went into a dream state – I felt removed from reality, as my brain tried to process what I was being told. I was initially told that they were not sure if Max had Duchenne or Becker muscular dystrophy. The diagnosis of Becker muscular dystrophy came as some relief shortly afterwards.

I remember feeling so angry that these two words, ‘Duchenne’ and ‘Becker’, that were previously unknown to me, were now part of my everyday vocabulary. I wished that I could un-learn them, and forget they ever existed. When I got Max’s diagnosis, Muscular Dystrophy UK’s website was one of the most useful and supportive sites that I visited.

Max still has a development delay, and has recently been diagnosed with autism. There is a connection between some muscle-wasting conditions and autism. Max is non-verbal, and although he is very active and loves to climb, he struggles to keep up on family walks in the park. It is difficult to know if this is because his legs ache, as he is unable to communicate, which is hard.

Max’s favourite things are trips to the park, he likes to have rough-and-tumble play with his sister and above all he loves going to the cinema, followed by pizza.

We have a special period around bedtime where Max seems to communicate with me more than at any other time of the day, and he will try and copy sounds I make and blow me kisses, which makes my heart melt.

At a time in my life where I felt completely suffocated by my complete lack of control over what was going to happen to Max, I decided that I was going to do the only thing I could, which was to try and make a difference by fundraising for Muscular Dystrophy UK. The hope that every little bit of cash will help to find a cure, kept me going.

The charity was advertising for people to take on a skydive, and before I knew it, I had completed my online registration without a second thought for what I was letting myself in for! My cousin Nicola signed up too and we created our team name – ‘Team MAXimise Potential’.

I decided I wanted to do an annual sponsored event and a social fundraiser, and I hosted my first charity evening at the end of last year. The next challenge was taking on Europe’s longest zip wire – this was a brilliant experience and my favourite so far – I would recommend it to anybody.

In August last year, ‘Team MAXimise Potential’ was part of Muscular Dystrophy UK’s Move a Mile for Muscles summer fundraising campaign. Fifteen of us did a bar crawl along the Blackpool Mile, selling kisses and even busking to dance music in return for a donation to our collection.

The challenge for this year is swimming with sharks! My cousin Nicola and I will face our fears in February.

Hope inspires me to keep fundraising, and I won’t give up until a cure for all types of muscle-wasting conditions is found. So far we have raised nearly £5,500 for Muscular Dystrophy UK. Knowing you are doing something positive, rather than focusing on the negatives of having a child with Becker muscular dystrophy, is empowering, and helps me deal with my sadness.”

Do you fancy taking on shark diving challenge to raise money for Muscular Dystrophy UK? Find out how to get involved.

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