Duchenne UK

Joe's Journey to End Duchenne

Joe's Journey to End Duchenne is a Family & Friends Fund supporting Duchenne UK
£23,061
raised
RCN 1147094

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Story

Our son Joe has been diagnosed Duchenne muscular dystrophy. We desperately want to raise money to find a cure and effective treatment.

Our gorgeous twins Jess & Joe were born in June 2013, after years of infertility and IVF. As they werent expected until the September their arrival 10 weeks premature was a giant surprise!! As was the incredible love at first sight of these teeny, tiny babas (Jess 2lb14, Joe 2lb5).

They had a really tough time Joe especially sepsis, chronic lung disease, a collapsed lung, hole in the heart, cardiac arrest 35 minutes to resuscitate him, hernias caused by needing a ventilator to breathe for a long time, morphine overdose.

After 3 months in the neonatal unit Joe came home, hurray! but his battles were not over. By age 3, Joe had had 10 surgeries, numerous hospital stays and he depended (&still does) on a tummy feeding tube as he cant eat well for himself. He was behind on development milestones like climbing stairs and running but surely no wonder after all he had had to contend with?

He is a superstar, a cheery, happy little fella Jesss best friend and just as we thought he was gonna get a break, he was diagnosed with Duchenne muscular dystrophy (DMD).

DMD is a devastating, aggressive, progressive muscle-wasting disorder which primarily affects boys. 1 in 3600 boys in the U.K.

Those diagnosed with Duchenne are unable to produce dystrophin, a protein vital for the stability of muscle cells, without it muscle cells gradually waste and die. The ability to walk is usually lost by the early teens, by the early 20s those affected are mostly paralysed.

And life expectancy is just 28 years old. There is no cure, Duchenne is currently 100% fatal.

Incredible research is underway to find a cure for Duchenne which gives us a glimmer of hope! A cure just cant come soon enough, we want to raise money to accelerate research into treatments and make Duchenne history for all Duchenne warriors.

Please help to save our amazing, gorgeous boy our hero just look at that little face!

About the charity

Duchenne UK

Verified by JustGiving

RCN 1147094
As the leading Duchenne muscular dystrophy (DMD) charity in the UK, we want to find effective treatments for DMD and end its devastating impact. We’re going further than anyone has before, and we’re doing it faster, because this generation of people living with DMD can’t wait.

Donation summary

Total raised
£23,060.50
+ £778.75 Gift Aid
Online donations
£3,963.00
Offline donations
£4,087.00
Direct donations
£3,185.00
Donations via fundraisers
£15,788.50

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