Thank you so much for taking the time to visit my JustGiving page. It truly means more than you know.

Joshua was just two weeks old when we were told he had Prader-Willi Syndrome (PWS) — a rare, life-limiting genetic condition that affects approximately 1 in 15,000 births.

I remember sitting there, trying to process words that felt impossible to understand. We were told PWS would affect almost every part of Joshua’s life — his muscles, his hormones, his learning, his behaviour, his ability to regulate temperature, his sleep, and eventually, his relationship with food.

When Joshua was born, his muscle tone was so poor that he couldn’t breathe properly on his own. He couldn’t cry strongly. He couldn’t suck from a bottle. He barely moved. Our tiny baby needed oxygen 24 hours a day. He was fed through a nasogastric tube. We had to reposition him constantly because he didn’t have the strength to move himself.

Those early days were filled with fear, monitors, hospital corridors and questions no parent ever expects to ask.

PWS is caused by a genetic error on chromosome 15. It affects the hypothalamus — the part of the brain responsible for hunger, temperature control, hormones, growth, metabolism and sleep. Because of this, PWS is not “just” one condition. It is complex and lifelong.

As children with PWS grow, one of the most devastating symptoms develops: an inability to feel full. Their brains do not register satiety. This isn’t a matter of willpower or behaviour — it is neurological. Joshua will never feel the sensation of being “full” after eating. Without strict supervision, this can lead to life-threatening obesity, choking, food-seeking behaviours and even stomach rupture.

Children and adults with PWS often need locked kitchens, constant supervision around food, and carefully controlled routines. Food security becomes a safety measure, not a parenting choice.

PWS also comes with:

Learning difficulties

Emotional regulation challenges

Anxiety and obsessive behaviours

High pain thresholds (meaning serious illness or injury can go unnoticed)

Poor temperature regulation (Joshua may not develop a fever even when very unwell)

Hormone deficiencies

Increased risk of scoliosis

Increased risk of type 2 diabetes

Sleep disorders

Higher risk of epilepsy — something Joshua is currently being investigated for after experiencing multiple seizures

But here is what the leaflets and medical books don’t tell you.

They don’t tell you how unbelievably determined these children are.

They don’t tell you how Joshua, who once couldn’t even lift his arms, now runs after us with his little penguin waddle.

They don’t tell you how a baby who couldn’t feed now chatters non-stop and plays with his toys like any other five-year-old.

They don’t tell you how much joy one little boy can bring into a room.

Joshua receives growth hormone injections every single night — a treatment that has dramatically improved his muscle tone, strength, growth and development. Years ago, this wasn’t available. Research made that possible.

And that’s why this fundraiser matters so much to us.

Organisations like Foundation for Prader-Willi Research UK are dedicated solely to funding research into better treatments — and one day, hopefully, a cure. Their work has already transformed outcomes for children like Joshua. But there is still so much more to be done.

PWS is rare. Rare conditions often receive limited funding. Yet for families living with it, it is everything.

This charity gives me hope — hope that Joshua’s future will be safer, fuller, and brighter. Hope that one day we won’t have to fear what hyperphagia might bring. Hope that medical breakthroughs will continue.

Most of all, hope that Joshua will have the chance to live the happiest, healthiest life possible.

If you are able to donate, share, or support in any way, you are helping fund research that could change — and save — lives.

From the bottom of my heart, thank you for standing with us 🤍