My name is Katherine and I’m a proud mum to two wonderful kids – Elizabeth, who is 12, and her younger brother Joseph, who is 10. I am writing this Christmas to tell you how Muscular Dystrophy UK (MDUK) has supported my entire family in the years since Joseph was diagnosed with Duchenne muscular dystrophy.
Like so many people, I knew very little about muscular dystrophy before my son’s diagnosis. When Joseph was little, my husband Gareth and I noticed he was a late developer, hitting his milestones later than other children his age, so we talked to our GP. After many referrals and tests, in 2016 – when Joseph was four – we were given the news that he had Duchenne.
We were completely devastated. Our consultant advised us to contact MDUK and we relied on information from them to learn all we could about his condition, and prepared ourselves for what looked like a very difficult road ahead.
In the years since his diagnosis, Joseph has done his best to stay positive. He is a very happy-go-lucky boy by nature and is always making the rest of us laugh. As his symptoms have progressed, though, it’s become harder for him to do the things he loves to do.
Walking became more and more difficult for Joseph, and it was heart-breaking to see the sadness and frustration on his face when he saw other children running about, when he no longer could. We actually started to avoid playgrounds or areas with a lot of other children - it was just too difficult. When Joseph is in the pool though, that’s a different story. He absolutely loves being in the water as it gives him some of his movement back. Joseph loves to do what he calls his ‘pool walk’, walking through the water as it supports him.
But things changed when the Covid-19 pandemic started. Suddenly, vital services closed, physio sessions and hospital appointments were cancelled or indefinitely postponed, and Joseph was no longer able to go swimming. This setback hit Joseph hard. Without this support and physical activity, his mobility really suffered and, during this time, he lost the ability to walk. In fact, it was just last December that Joseph started using a wheelchair full time, which made it a very different Christmas for our family.
We had known for some time that this was coming, of course, it’s an inevitable part of Joseph’s condition. That’s why we had already started the process of applying to our local council to authorise a series of adaptations to our house, making it accessible for the day that Joseph was no longer able to walk. However, when we applied, Joseph was still walking, and the council based their initial decision solely on the ‘here and now’. They couldn’t see Joseph’s future needs and, as a result, spent time arguing with us about the plans and saying ‘no’ to many things we knew he would need.
After many delays in getting approval, the work was due to start in March 2020, but then the pandemic hit, and the builders couldn’t come. By the time Joseph stopped walking, in late 2020, we found ourselves in a situation where we had no hoist and no adapted bathroom – a situation which we feel could have been avoided if the council had acted earlier and had appreciated the progressive nature of Joseph’s condition.
Throughout this whole ordeal, Muscular Dystrophy UK’s advocacy service has been a total godsend. When we ran into difficulties with the council, MDUK was there to submit applications, send letters, and help us navigate the process. They also provided us with their fantastic adaptations manual, which helps professionals and organisations understand the needs of people living with the condition, now and in the future, so things can be put in place before they’re needed.
The team at MDUK had the expertise to tell us what should have been happening and what we were entitled to. They equipped us with knowledge and information so we could challenge decisions that weren’t right for Joseph’s needs. And, because they understand how Duchenne progresses, they were able to clearly articulate why we needed the adaptations we were asking for, based on what would happen in the future.
Now, finally, the work is underway. In fact, it’s all set to be finished by Christmas, which is a far cry from where we found ourselves the same time last year. As a family, we feel as though we’ll have our home back, and no longer be living in a building site. And for Joseph, it’ll be like living in a new house, one that truly meets his needs, with much better mobility and quality of life; all of which enable us to care for him better – benefits that will be felt by everybody.
None of this work would have been possible without Muscular Dystrophy UK. Will you make a gift this Christmas, so that they can continue to provide vital, life-changing support so no family has to go through what we’ve been through alone?
If you can give a gift today, you could help fund the information service, helping to ensure people can find accurate answers about neuromuscular conditions, both on the web and by calling the helpline. The difference this has made to me and my family is simply incalculable.
A larger donation could help support the advocacy service, helping more families like mine secure the funding for the vital home adaptations they need, to make them as accessible as possible to the changing needs of a child with a muscle-wasting condition.
With an especially generous gift, you could help pay for ground-breaking research that MDUK funds, giving hope for future generations and bringing us closer to a world where there are treatments and ultimately cures for all muscle-wasting conditions.
For so many families like mine, this has been an extremely challenging time. Between Joseph’s Duchenne and the pandemic, we’ve felt at times like we’re swimming in a storm. It’s made all the difference in the world to have Muscular Dystrophy UK by our side, helping to calm the waters and giving us hope.
Thank you so much for reading my letter, and for anything you can give this Christmas.
PS: I can’t emphasise enough just how big a difference Muscular Dystrophy UK has made in my family’s life since Joseph’s diagnosis. There are many other families in need of similar help – please give what you can this Christmas, so they can be supported too. Click here to read a letter from Jackie Munro, one of the Advocacy Team at MDUK, who have been there for us when we needed them most.