On the 9th of August 2025, at 6:35am, our world broke.

Our daughter, Aria — our Ari Boo — died in our arms. She was just 20 months old. We held her close, kissed her cheeks, and told her we loved her as her brave little body let go.

Aria was pure magic. She loved lullabies, soft lights, and being held close enough to hear our hearts. Her giggle could fill a room. She said “Mama” in the softest voice, and when her tiny fingers curled around ours, the rest of the world disappeared. She adored Bluey, lit up when Ms Rachel sang, and could spend hours watching her favourite songs and stories. She was tender, cheeky, curious — a little girl who should have had a lifetime ahead of her.

But in March this year, everything changed. One day we were at home, living our ordinary family life; the next, we were in hospital, surrounded by wires, beeping machines, and a fear we couldn’t put into words. After weeks of not knowing, the answer came — a diagnosis that crushed us: POLG-related mitochondrial disease.

It’s a rare, cruel genetic condition that robs the body of its ability to make energy — the very thing every cell needs to survive. Without it, organs fail, skills vanish, and little by little, a child’s life is taken away. It is relentless. It is terminal. And it moved through Aria’s body faster than anyone expected.

We watched mito strip her of the things she loved. First, it took her strength. Then her words. Then her ability to eat without tubes, to move without struggle, to laugh without exhaustion. It didn’t just take from her — it took from us too. It stole her first steps, future birthdays, and so many of the ordinary days we will forever ache for.

And yet, through everything, Aria fought. She found ways to smile when her tiny body was wracked with seizures. In ICU, a nurse tied her curls into pigtails and said she looked like Boo from Monsters, Inc. — and from that day on, she was “Ari Boo.” Our fighter. Our heart.

There is no cure for POLG mitochondrial disease. But there should be. No child should have to suffer the way Aria did. No parent should have to watch their baby fade away, knowing there is nothing in the world that can stop it.

We can’t change what happened to Aria. But we can fight for the future she deserved — and for every child still in this battle. That’s why we created Team AriBoo: to honour her life and raise money for The Lily Foundation, the UK’s leading mitochondrial disease charity. Your donation could help fund the research that changes this story for another family. It could give them more time, more answers, more hope.

Aria mattered. Her life mattered. And we will spend the rest of ours making sure the world knows it.

#ForAriBoo