Emma’s Blog

It seems like a life time away since our Supporters Thank You Lunch on 6^th March.  Such a fabulous day, welcoming many of our supporters, all 160 of them to the newly opened Novotel in Leicester. It seems inconceivable now, just 6 weeks on, to imagine mingling with so many people.  It was shortly afterwards that Coronavirus struck our UK shores causing us all to lock ourselves away.

For us this day came a little sooner than most as we knew our boys living with Duchenne were deemed ‘high risk and very vulnerable’ to the disease.  Our consultants stressed that little was known about the consequences of those with compromised immune systems coupled with weakened lung capacity and heart problems would react. It was better to be safe than sorry.

All families affected by Duchenne are now shielding themselves from the outside world to avoid having to go into hospital, much like all of us.

We’ve embraced ‘home schooling’ and staying inside baking cakes, playing games and enjoying fresh air in the garden.  Alex has impressed me no end, he was scared to start with – like all of us – but soon got his head around everything. During this time he has started writing a blog, which he’ll launch when he’s ready, he’s also writing a cook book – Alex’s Whisk – to help raise a few pennies for Alex’s Wish and hopes to have this ready in a few months’ time. 

He’s shaved his head to support our ‘Shave it Yourself’ haircut challenge – shave/cut your hair and donate what you would have spent at the barbers/hairdressers. He’s been so kind supporting his sister with homework, helping her with times tables and type-writing practice. They read stories to each other and spend many an hour creating delicious bakes.  If I don’t re-emerge to normal life five stones heavier it will be a miracle!

Turning our thoughts to other parents and families affected by Duchenne.  It breaks my heart to read how much worry this is putting on them.  Having to work so hard to get their boys recognised as officially being in the ‘at risk’ community so they can receive the necessary support they need.  Worrying about what would happen if their child gets the disease and would they be able to access ventilation and whether if choices had to be made as to who they would save – would our boys be amongst them. These are real worries. It’s also hard to keep up with their daily physio and exercise when space is limited and going outside is not even an option.

Living with Duchenne, we constantly worry anyway about our child’s precious life – this is not a short-term problem – but instead one that lasts a lifetime. When Coronavirus is long gone, Duchenne will still dominate our everyday lives.

Alex’s clinical trial has been put on hold for the next 3 months, as doctors and nurses involved in running the trials are moved across to fight COVID-19 – plus its safer for the patients as they avoid having to visit hospitals and take bloods etc.  Coronavirus has a lot to answer for – many trials will be affected, what impact it will have on us finding treatments is yet to revealed. But we will continue our fight, as we always do – and this will be a blip in time.

Our spring and summer events are all on hold – and rightly so – our focus like everybodies is to keep everyone safe, stay at home and support our local communities as much as we can.  This will have a big impact on what we hoped to raise this year, but we will bounce back once this is all over. All we ask is for our supporters to be by our side when we do.

As a charity, we’ve taken the decision at Alex’s Wish to launch a suite of activities and challenges that people can do from home. Whilst any donations will be gratefully received, we really appreciate money is tight – people are worried out their jobs, businesses and families. We totally get this. We are not going to ask for money, instead a voluntary small donation should you wish – and any that we do receive during the next 3 months from our online activities will also help fund our local community to support them through COVID-19.

I’m super proud of both Zoe and Heidi who have volunteered to help support the fight, giving blood, volunteering to support nurses with coaching, calling those who are home alone, getting supplies for those that can’t and making head bands to give to nurses to make wearing masks and protective equipment a little more bearable.

Like many others, we are so looking forward to the day we can see each other again, re-arrange our outdoor events… but until that day stay safe and take care, we are thinking of you all and wishing you and your loved ones all the very best.

Much love,

Emma X

Alex’s mum and Founder of Alex’s Wish

Posted in Blog