Story
In early 2025 Aria's Parents we were given a diagnosis no parent should ever hear: POLG-related mitochondrial disease. It’s a rare genetic condition that slowly shuts down the body’s ability to make energy — the very thing every cell needs to survive. It is progressive. It is devastating. And it is terminal.
They are watching their daughter slip away, one heartbreak at a time. There is no cure. They don’t know how long they have with her — weeks, months, maybe more. Maybe less. But somehow, through seizures and hospital stays, tubes and tests, Aria still finds the strength to smile. In ICU, a nurse tied her little curls into pigtails and said she looked like Boo from Monsters, Inc. — and that’s how Ari Boo was born.
They can’t change what’s happening Aria but together we can fight for meaning. That’s why I have joined Team Aria: to honour her life and raise money for The Lily Foundation, the UK’s leading mitochondrial disease charity. Please donate today.
Thank you