Emma’s Autumn UpdateNovember 29, 2019 11:31 am
As we approach the end of the year, it’s a great time to reflect on everything which has been going on. The last time I wrote a blog, I explained that Alex had started a new clinical trial – Givinostat – which we were hopeful would help Alex and make a difference. But the truth is, we haven’t seen a positive difference and if anything seen some decline and Alex is sure he’s on the placebo.
Every clinical trial must have a placebo in order to be able to effectively say whether a new drug is having any positive effect. The upside is that Alex is being seen regularly by the wonderful team up in Newcastle and I wouldn’t change that for the world.
Until something new comes along that Alex can participate in, we will continue with this trial – whilst keeping our eyes open for other opportunities. Most of the trials are open to boys under 10 years of age, Alex is 13 now so many trials are not accessible to us.
Alex is doing really well at school and is loving graphic art – I’m so proud that he doesn’t let Duchenne get in the way of what he wants to do. He’s already looking for ideas on what to do when he finally leaves school and designing games is one option. We’ve recently had meetings with the SEN team (special educational needs) at his senior school to make sure they can meet his changing needs. Writing now makes his hands ache so they have agreed that we will need some extra support to help him during GCSE’s, but we must start putting things in to place now for him to be eligible for breaks or extra time to sit his exams.
As some of you are aware we are now it the process of getting Alex a wheelchair with some power so we can still do the things we want to as a family – at the moment we have to schedule in down-time/lazy days if we’ve had an active day which gives Alex plenty of time to rest and recuperate. This will mean that a new power chair will help us to enjoy family walks again, open our horizons and stop us all worrying about his frequent falls.
Recently we have had two surprise trips to A&E as Alex had a suspected fracture of the leg/hip – the same side of his previous hip break – so as you can imagine this was incredibly worrying. Luckily, he hadn’t, but I really don’t want to see A&E again for some time – if ever!
On the charity front, I am absolutely delighted with the support we have had this year – we are so grateful to every single supporter and business supporter for joining us on our journey to finding a cure. We’ve reached our £1M raised target early, we always said we would love to raise this much money by 2020 – and our goal has been reached ahead of schedule in October 2019. This achievement would not have been possible without your support – thank you so very much, it means so much and Alex is incredibly proud of what we have been able to achieve in a relatively short amount of time.
It is really important to say though this certainly does not mean we stop our work; we are becoming stronger every single year and continuing to build on this momentum with increased enthusiasm. We will not stop until we achieve our mission – to bring effective new treatments to all boys living with Duchenne. To enable them to grow stronger, walk for longer, live a better quality of life and ultimately to live a long and happy life.
It’s good to set targets and goals which stretch you and keep you focussed so we have set ourselves a new goal to reach our next £1M within the next 3 years. It’s going to be challenge, but we are up for it!
Medical research is progressing at a good rate, there are more clinical trials taking place than ever before and with Gene Therapy and Stem Cell Therapy (both of which Alex’s Wish has helped fund) we remain optimistic and positive about the future. We want to save this generation of boys, including Alex – we know time is not on our side – so bring on 2020 we are ready for you and we are reaching out to our supporters to ask you to continue your journey with us, share our stories and get as many people talking about Duchenne as possible.
It’s only by working closely together – with our supporters and with Duchenne UK (a fabulous charity run by parents to boys with Duchenne) will be achieve our mission – to end Duchenne for all.
Wishing you all the very best as we come into the festive period, take time out and enjoy your loved ones, time is so precious.
Much love Em (Founder of Alex’s Wish and mum to Alex) xxx
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