Joey's Story
Dear Edinburgh, meet our son Joey.
He loves music, colourful lights, and getting lots of attention!
For over a year now, the children’s hospital has been our home. We still don’t know when we’ll be able to leave, or when we’ll finally bring Joey home for good.
During pregnancy, we were told our baby had Duchenne Muscular Dystrophy (DMD), a progressive muscle-wasting condition. Two weeks later, a second devastating diagnosis: Cornelia de Lange Syndrome (CdLS). Joey is believed to be the only person in the world recorded as having both conditions.
I can’t even think back to that time. It’s all just a massive blur.
We were told Joey had a very low chance of survival, and that it was unlikely he would be born breathing on his own. But he surprised us all, and he’s been fighting ever since.
Every day feels uncertain
No one could tell us then how long we’d be in hospital, but we never imagined it would be more than a year. Every day feels uncertain. You’re just living in limbo the whole time.
Both of Joey’s conditions are progressive, and doctors don’t know how they will affect him as he grows. Right now, he needs a ventilator 24 hours a day to help him breathe and has a tracheostomy tube in his windpipe.
It’s only really been since November that he’s stabilised. Before that, he would often turn blue and stop breathing.
We were told several times that he might not make it through the night. It was terrifying, and that fear never really leaves you.
For a long time, we didn’t even feel like his parents – more like people standing by, watching on helplessly.
Ashley - Joey's mum
A constant battle
Joey has had countless infections, surgeries on his airway and bowel, and a port inserted into his chest. For so long, it felt like there was something new every week.
It was a constant battle. We lived in fight-or-flight mode, always bracing ourselves, never knowing what would happen next.
Nobody can tell us if he will ever walk or talk. He may need his breathing machine for the rest of his life. It all depends on him.
When you spend so long in hospital, you do start to feel robbed of so many things. For a long time, we didn’t even feel like his parents – more like people standing by, watching on helplessly.
Support from ECHC
Edinburgh Children’s Hospital Charity was there when we were falling apart. No fuss. No forms. Just help, compassion and kindness. Having someone to just sit with you, who really hears you, and makes you feel less alone – that makes all the difference.
Your donations make that possible, so thank you.
We can’t focus on the past or the future. We have to stay in the here and now. More than anything, we just want Joey home. We want to make his wee life as good as we can.
Edinburgh, you were there when we had nobody else. If you can, please donate today so our city’s children don’t face their darkest days alone.
Ashley, Joey’s mum
