Alex’s Trial UpdateJanuary 10, 2019 12:13 pm
Here we go again…
Just back from a two-day trip to Newcastle Royal Infirmary to see if we can get Alex onto a new clinical trial specifically looking at reducing inflammation in his muscles which in turn will hopefully make his muscles healthier and more productive, back again in two weeks when we’ll find out if he’s eligible!!
‘Why?’ you might ask when he’s only just finished a trial that didn’t work.
It’s because there are so many benefits to being on a trial:
- It might help his muscles which might give him more energy/abilities to do more things he loves
- It’s helping progress research into DMD, which will hopefully benefit all boys with the condition something we feel strongly about. Even if it doesn’t work like the last one, it will mean it will be another drug that is excluded – it’s as important to know what doesn’t work as well as what does to evolve and progress research
- We are seen regularly by the experts in Duchenne, so in effect, being micro managed – a big plus point!
- Alex said in his own words when completing a questionnaire that being on a trial makes him feel better – gives him more hope
- Alex and I get some quality time together (which is a rarity with family life) and we get to chat about all sorts of things, especially anything that’s been bothering him
- Alex enjoys being with the fab team in Newcastle and finally it’s an extra few days off school so we combine it with fun things.
We love Alex’s enthusiasm – he’s a true fighter!
This is why we at Alex’s Wish continue doing what we do, because without funding these opportunities they wouldn’t be available to boys with Duchenne. It’s so important we move forward and progress our mission to end Duchenne for all. Our supporters help raise vital funds by taking part in our events – to find out how you can help in 2019, please visit our events page and sign-up, we would love to hear from you.
Fingers crossed he gets accepted will keep you posted.
Love Em X
#Duchenne #Clinicaltrials #Hope #Progress #Newcastle
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