Family and Friends Funds

Joe's Journey to End Duchenne

Our gorgeous twins Jess & Joe were born in June 2013, after years of infertility and IVF. As they weren’t 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 can’t 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 – Jess’s 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 20’s 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 can’t 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! ”

You can donate to Joe’s Journey here.