Sunday Spotlight: Archie’s Army

Just like our Alex, and so many young boys in the country, eight- year-old Archie has Duchenne. Here, his Mum Sam Hurst tells trustee Tom Carter how the muscular dystrophy diagnosis changed their family’s world and inspired them to start their own charity.

Q: There are about 100 boys born with Duchenne muscular dystrophy in the UK every year and this has such a massive effect on families. What was it like when Archie received his diagnosis?

A: Archie was a late walker, and he was referred to hospital just before his second birthday. The doctors said it was all fine, and that he should have only just started to walk about a week earlier, typically. So they did a blood test, thinking it could be a low iron deficiency, but one week later I went to work, and then had Archie’s dad on the phone saying we needed to get to the hospital – that something was seriously wrong. The doctors said he might have something wrong with his muscles, but he was walking, so after going in and out of hospital for the next few weeks they confirmed that it was Duchenne. When we first questioned the possibility of treatment we were told we weren’t going to receive anything, We should take Archie home and love him while we can. That was the advice we were offered.

Q: It is such a heartbreaking situation to be in, but you have been able to be proactive and start up your charity, Archie’s Army. How has it been taking on and running this new project?
A: After receiving the news from the doctors we pushed ourselves straight into the charity. We has to get out of the hole we were in, almost grieving for a child that was still alive. We started fundraising, gained a lot of support from friends, family and strangers as well. The first event that we did was an 80’s themed night, and we’ve had cycling events which have been great. It’s a lot of work but we also love doing oy as this gives us something positive to take away from a really rubbish situation. The events are good fun and we meet lots of incredible people there.

Q: Archie’s Army is a relatively new charity, being set up in 2015, and many organisations faced major challenges as a result of the pandemic. How has Covid-19 affected your progress?

A: We’re not a big charity, and we’re doing as many fundraising events as we can, but Covid disrupted us massively. It was quite cruel how the pandemic damaged our charity. It’s had a huge impact, and feels like we’re almost starting again in a way. Archie has turned six and we needed to make home adaptations, as he was struggling to get up the stairs and things like that. We had lots of events planned, nut had to cancel all of them. We still don’t have the adaptions and now it’s a rush to find the funds and get the changes to out home he needs.

Q: Thankfully, Archie is now on clinical trails – how have those been for him, and what do these treatments mean for your daily lives?

A: As of today he has been on two clinical trials. He started his latest trial in September and it is going well. We travel to London once a week for them, and Archie is an absolute star. He has infusions every single week and he sits there happily eating his sandwich – you wouldn’t even know he was doing anything out of the ordinary! He’s absolutely brilliant. For and eight-year-old with muscular dystrophy he is doing incredibly well. He can walk, and though he uses a wheelchair for longer distances, he keeps going, trying to keep up with his friends and at the moment he is managing himself as well as he can do. Archie is a happy boy.

Q: Looking forward to this year and the future, how is Archie’s Army planning to #BeMoreAlex

A: With us being out of lockdown restrictions, now is the time we’ve got that energy back. Having two years off, we’ve been so eager to get restarted. We don’t have a choice anymore – Archie needs those adaptions, and needs them now. We also want to spread awareness about the condition. Yes, its’s a horrible situation to be in, but it is not all bad. You don’t have to spend your days being sad and grieving, there’s so much more to it than that. People with Duchenne are not just the conditions – they are still children or adults living their lives. It’s about not being the condition and being the person. Going out and having fun. You may not be able to do everything the same way as others, bit you can still do a lot.
To find out more about Archie’s Army, visit:
https://www.justgiving.com/campaigns/charity/muscular-dystrophy/archiesarmy

Posted in Sunday Spotlight