Leanne Gateley lives in Radcliffe, Manchester with her eight-year-old son Max and five-year-old daughter Amy. Max, was diagnosed with Becker muscular dystrophy in 2013.
I first became concerned about Max’s health when he was six months old, when I noticed he wasn’t hitting any of his milestones. I decided to schedule an appointment with my GP, who referred Max to the Child Development Centre at Fairfield Hospital, Bury, where he was given a variety of tests. The results came back clear, so they sent us a letter saying Max had a global developmental delay across all areas. We started seeing a speech therapist, physiotherapist and occupational therapist, thinking Max would catch up.”
However, shortly after Max turned two, Leanne received a phone call from his consultant, asking her to attend the Genetics Clinic at the Royal Manchester Children’s Hospital.
Leanne was shocked when the consultant explained that Max’s blood had been retested for muscular dystrophy – the results had come back positive and after further tests Max was confirmed as having Becker muscular dystrophy.
I was completely devastated and could barely take it in. I had no idea how it was going to affect our lives. It was like my brain had become detached from my body as I desperately tried to process what I was being told.”
At the moment Max is quite physically able although he tires easily. Max was also diagnosed with autism in 2015, which research suggests is more common in those with muscular dystrophy.
Max is now non-verbal, which has made it more difficult for me to know when he is in pain. He communicates in his own way – through sounds and gestures and blowing kisses – and is a very loving little boy, but at the moment it’s the autism that causes him most difficulty day-to day. He is a big movie and pizza fan and loves big hugs with his mummy.”
Leanne was given an information sheet at the hospital, produced by Muscular Dystrophy UK.
It was the most useful document I had received. I went onto the Muscular Dystrophy UK website that same evening and saw that here was hope and people out there doing great things and I felt inspired by what other people had done to raise money and wanted to get involved. I’ve since taken part in several fundraising events including Make Today Count skydiving, the Snowdonia Zipslide event and Diving with Sharks as well as organising my own bucket collections and social events and encouraging friends and family to get involved.”
Most of all having the family fund makes me feel like I am making a difference, we have earned over £25k so far and it helps me feel like I have some control over Max’s future, if we raise funds it makes us all as an MD community one step closer to a cure.
The Team MAXimise Potential Family Fund has been set up to raise further funds into treatments specifically beneficial to people with Becker muscular dystrophy.
The money raised is absolutely critical for keeping vital research going. My greatest hope is it will eventually help change the lives of kids like Max.
How can you help?
- You can follow and support Team MAXimise Potential on their Facebook Page.
Setting up a family fund like Team MAXimise Potential is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.