Alex’s Wish

Maguire's Purpose

September 7th 2021 is World Duchenne Awareness Day. So when choosing the charity to feature this month was super easy, a charity that was presented to me back beginning of 2020 by a few friends over in the UK. If you’ve noticed from all the past featured charities that I didn’t just limit them to ones here in the US. I wanted to give a chance to spread awareness for as many charities as possible no matter where in the world they were.

Alex’s Wish is a charity set-up to eradicate Duchenne Muscular Dystrophy, an aggressive form of Muscular Dystrophy that affects 1 in every 3,500 boys born. Every single muscle is destroyed due to a lack of protein.  It also affects the heart and lungs as these are muscles too.

Alex’s Wish was set-up by Emma and Andy Hallam (parents to Alex) in late 2012 to help raise vital funds to help bring about new treatments and ultimately a cure for this devastating condition.

When I started to do my research on each charity that I would be featuring in 2021 back in 2020 I knew I wanted include charities that I didn’t know existed. Small charities making a world of difference. When I started following and researching Alex’s Wish I was intrigued by all that they have accomplished and all that they hope to achieve in the next 10 years. Their mission is amazing, their core values of their non profit I truly connected with. I have learned so much about what Duchenne Muscular Dystrophy truly is over the past year. It’s devastating to hear the stories from families and kids who have suffered from this rare disease.

Here are some facts of Duchenne Muscular Dystrophy: it’s an aggressive form of Muscular Dystrophy that affects 1 in every 3,500 boys born.
It leads to progressive muscle loss due to lack of protein and affects the heart and the lungs tremendously. There are some treatments to help those who are diagnosed with Duchenne’s but as of now there isn’t a cure.

After researching the stages this is what shocked me the most.

Age 3-5 : Diagnosis / trouble keeping up with peers
Age 6-9: Muscles begin to deteriorate
Age 9-13: Progressive muscle loss and wheelchair dependent
Age 13+: Heart and respiratory complications begin
Age 19+: Ventilation dependent / 24 hour care
Mid-late 20’s: Current average age boys will lose their life

The Facts:

  • 60% are carrier cases meaning the mother carries the gene and passes this onto their new born child
  • 40% are spontaneous mutations meaning a child with Duchenne can be born without the mother carrying the faulty gene and therefore can affect anyone at any time
  • Around 50 boys are affected in the East Midlands
  • 2 families every single week will receive a diagnosis
  • 2,500 boys are affected in the UK alone
  • 300,000 boys affected worldwide
  • Boys affected by Duchenne may look healthy on the outside, but on the inside fatty scare tissue is what makes up a bulk of their muscle tissue
  • Duchenne causes respiratory impairment and cardiomyopathy in later years
  • Very few drugs prescribed for Duchenne – steroids which have serious side effects and Translarna which will only help around 13% of all cases
  • The landscape of research has changed dramatically over recent years and intensive research to find a cure is carrying on in many centres around the world
  • 60+ clinical trials are now taking place thanks to charities like Alex’s Wish
  • Care is improving and boys are now living longer – but still not long enough

Take the time today to learn a little bit about this rare condition and this amazing charity!

Ways to get involved:

#bemorelikealex campaign

Fundraise for Alex’s Wish

Social Links:

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