Emma’s Summer Blog

September 29, 2020 9:10 am

Well what a crazy year it’s been for us all, but pleased to finally have Alex and Isla back at school again learning and seeing their friends – for one thing it means I can actually get my head down and do lots of work on the charity, but also keep my fridge stocked up for a while… oh and finally get my nails and hair done. Having the little ones at home makes you realise how much food you get through 😊

We managed to get a week’s holiday at one of our favourite places… Cornwall.  Alex got to try out his new fabulous power trike which is an absolute god send. It really has given us all a new lease of life. Last week we all went out to Rutland Water for a bike ride, walk and trike ride and it is so nice to have us altogether enjoying the fresh air. We’re off again to Cornwall for the October half term week and we can’t wait!  We’ve spent so much time at home it’s so nice to go somewhere else for a little while.  I hope you’re managing to get out and about on short breaks too, it keeps you sane…. and a break from hearing about the Pandemic and further restrictions, the news is driving me crazy as everything seems so negative.

We should have been back up at Newcastle this week, but it’s been postponed for a few weeks. We are waiting on confirmation that the clinical trial Alex has been on for the past 2 years, which was going to come to an end for him, will be extended. This means that regardless of whether Alex has been taking the actual drug or on a placebo (dummy drug), we know he will be on the real drug for the extension period. Over lockdown some early indications on his trial showed that it’s making some improvements… so fingers crossed we get the call to say it’s been approved, and he can start on the extension trial soon.  I must admit I am nervous for his physio appointment as they give us a score to let us know how Alex is doing and whether there’s been any decline, and since he’s not seen anyone face to face for some time, this is a worry for us.

We’ve been busy bees at the charity and coming up with creative ideas, after all our fundraising events are on hold, but we’re not letting that stop us. We have come up with some great simple school fundraising ideas aimed at primary schools, so if you know or are involved in local primary school in Leicestershire, we’d love to hear from you.  We’re also doing lots of Zoom calls and running monthly Zoom meetings for our business club members and have fundraising ideas that businesses can get involved with whilst being able to socially distance themselves. It was so amazing to see some of our supporters do the Coast to Coast ride this month, raising a staggering £10K for us, great to finally get an event underway this year. Thank you to everyone who has supported us during these times and are sharing our stories, it really does mean the world to us – thank you 😊

We are now working on a virtual ‘Unmasquerade Celebration’ on Thursday, 19th November, to help replace our ball this year and reaching out to local businesses and individuals for auction prizes, again if you know of anyone who can help with this we’d love to hear from you. Invitations and details will be published shortly, we’d love to see you there in the virtual world.

We’ve been speaking lots with our friends at Duchenne UK and other families affected by Duchenne and it’s so lovely to see all the amazing work that’s still going on, the money that’s still being raised to support our boys.  When COVID finally disappears, Duchenne will still be here so it’s important we don’t lose sight of that… it’s the why Alex’s Wish exists to STOP the devastating effects Duchenne has on our boys. Seeing Alex get very upset and cross that his legs weren’t working on holiday and how it makes him feel is enough to give me the fight to carry on – COVID or no COVID.

Our fabulous Zoe is back working 3 days a week and Heidi will start work again in October – but just for 1 day to start with.   We look forward to having the team back together again at least for a few days.

I promise I will write mini blogs lots more as it’s lovely to share what we’re doing with our supporters. I hope you keeping safe and sane and let us just hope we get this Pandemic under control and we can all get back to our normal lives soon.

Take care all,

Much love,

Emma X

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