Emma’s Blog June 2022

June 16, 2022 11:10 am

Wow doesn’t it feel like such a long time ago that we were all in lockdown. Spring has been a full-on fun-packed time, with birthday celebrations, charity events, clinical trial reviews, Jubilee celebrations, driving experiences, disability skiing… and that’s just the weekends!

We cannot believe that Alex is now 16, how time flies. We remember when he was first diagnosed with Duchenne over 12 years ago, and how we felt about him reaching this milestone. We certainly didn’t think he would be able to drive supercars, still be able to walk, be able to take the bus into his local town to meet up with friends. We didn’t think it would be possible he would have this much freedom. But he has. He’s grabbing life with both hands in line with our ‘Be More Alex’ philosophy, and who could blame him for that.

He’s even planning on a Sky Dive later this year, as he wants to do something completely crazy to prove that you really can do what you want. So long as we have his consultants blessing, I don’t think we’ll have a chance to stop him. We are opening this Sky Dive for others to take part and do it alongside Alex, if you’d like to get involved please get in touch.

He’s nearing the end of his GCSE exams, and he’s taken every single one of them with a laid back ‘it will all go fine’ approach, not yet sure whether this is the right approach, but from what we are told he should come out with good results. Keeping everything crossed. This will then hopefully lead onto him taking his A levels later this year. 

When I look back at his school life, we really couldn’t have wished for anything better. Mainstream was the right way to go for him personally.  Teachers, care advisors and friends have been so incredibly supportive, we are so grateful to them all. 

Alex continues to amaze us.  We had another Newcastle visit only last week and everything is going well. His physio said there is no change in his physical ability since he was seen three months ago. Yes, he has weakness in his upper legs and hips and that’s why he has frequent falls, as his knee just gives way without any warning. It’s not nice for him, but he deals with it all so well. We are so blessed to have the incredible team up in Newcastle, they are so experienced with seeing boys who have Duchenne – they understand the condition inside and out and give us so much advice and support.

Alex is still taking part in the extended Givinostat clinical trial, which is looking to be keeping those on the trial stable when taken in combination with steriods. You can read more about this trial here

We remain hopeful that Gene Therapy will come in Alex’s lifetime, the first boy was dosed here in the UK only this year – it’s coming way quicker than we originally thought. There’s still lots of complexities that need working through and we have recently invested in an exciting project to specifically to look at this. What we all hope with Gene Therapy is that it will halt disease progression at the point it is taken, it’s not likely to revert the muscle damage that’s already been caused – but it we can halt further disease that would be an incredible thing.

Alex finally got to experience a Supercars driving experience, a prize he won two years ago for the Young Volunteer of the Year Award at the Leicester Community Awards for all his fundraising during lockdown.  His prize was a day of racing at Everyman Racing Driving Experience at Prestwold.  He got to drive a Porsche, Ferrari, Lamborghini, and an Aston Martin – the look on his face when he arrived, he’s mad on supercars and this was the perfect prize for him.

He’s also recently tried out disability skiing with his good friend and charity ambassador Rich Copson, who has Becker’s (a milder form of the condition Alex has) and absolutely loved it. They are planning more experiences later this year. Just because you have a disability, it doesn’t mean it has to stop you from trying out new things.

On the Charity front, we’ve been busy bees – our Spring and Summer events are now in full swing. We recently held our Charnwood Forest Cycle Ride – we saw fewer numbers than we liked, but this event still helped us raise over £5,000 for Alex’s Wish. It’s a lovely local community event and we’ve decided we’ll continue to run this event which I’m really pleased about, it was one of our first ever fundraising events for the Charity. Then we had our Football Tournament, which was a huge success raising over £3,000 for Alex’s Wish.

Last weekend, our Crazy Abseil Challenge down the tallest tower in Europe (400 ft high) took place – all our abseilers did phenomenally well, it was too windy to be able to scale the building on the outside. But there was another plan waiting for us and we could do the abseil on the inside shafts instead. We had such fun, despite having to climb over railings with sheer drops on the other side and then hang off, climb ladders, drop through holes, and launch ourselves off ledges. I am so proud of everyone who took part – and it was so lovely to see some of the Miss Great Britain finalists join us, they all did so amazingly well. So far, we’ve been able to raise over £8,000 for Alex’s Wish.

Prudential Ride London took place on it’s new route out into the Essex Countryside, with a fabulous finish on Tower Bridge. We had two teams, one from Guidance Automation and Oadby Plastics in the ride – between them raising £11,500 – which is absolutely incredible.

Next up is our Supercars event on 26th June at Whatton House, if you’d like to find out more and book tickets visit this link.  Then we’ve got a loop the loop challenge, Golf Day, London Marathon, supporters’ lunch, and Annual Ball – it’s all going on.

We continued to be amazed by the support we get – so many individuals who do extra special things to raise money for our cause. They like us, want to see change for those living with Duchenne – they understand the daily challenges boys have, they want to see new treatments and a cure for this disease.  A disease which continues to be life-limiting.

The good news is we’ve been able to invest nearly £200K recently into some promising projects working closely with the fantastic charity Duchenne UK.  You can find out more about these projects on our news page. We couldn’t have done this without our supporters, so thank you from the bottom of our hearts for making such a big a difference. Hope is the one thing families living with Duchenne now have, and to see how much things have come on in the past 10 years is incredible.  Long may this continue.

See you all very soon,

Much love Emma (Alex’s mum) X

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