28/02/2026
🗣️ "Today, on , we’re sharing our son Toby’s story to help raise awareness of rare diseases.
Toby, nine, has a condition called Addison’s disease, which affects up to just 10,000 people in the UK. For a long time, Toby had really varied unexplained symptoms-craving salty foods, struggling in cold weather, low energy, and difficulty keeping up at school. We made repeated visits to our GP in Warrington and underwent various tests, but everything came back normal. Still, we knew something wasn’t right. After returning from holiday, he caught a sickness bug he just couldn’t shake and said his body felt “like jelly.” He was admitted to our local A&E and later transferred to HDU at Alder Hey with dangerously low sodium levels, which can be life-threatening. It was terrifying as we waited for his sodium levels to be brought back up to a safe level. He was diagnosed with Addison’s disease, a rare lifelong condition where the adrenal glands don’t produce enough hormones to regulate energy, blood pressure and the body’s response to stress, requiring daily hormone replacement to prevent adrenal crisis.
As parents, we were shocked and overwhelmed. It took time to adjust to daily medication and the constant awareness of emergencies and we’re still learning. However, it has also been a relief to have an explanation and treatment for all his symptoms. The wise advice we received from the team at Alder Hey was a great comfort and their words have stayed with us. It’s reassuring to know expert help is close by whenever we need it.
Since starting treatment, Toby is a different child. His energy is back, he’s enjoying school again, and we’ve got our happy, cheeky boy back. He used to struggle to get to the finish line at Sports Day, but now says, “I love sport and want to be a basketball player when I’m older.”
We hope that by talking about the unusual signs - ongoing fatigue, dizziness, tummy pain, salt cravings, unexplained weight loss - more professionals, including teachers, school staff and healthcare providers, will recognise the symptoms sooner. It may help another person find the correct diagnosis and, ultimately, save someone’s life.” 🩵