Toby (aka ‘Pup’) started to have seizures at 4 months old. He wasn’t smiling or reaching milestones and after some investigation we were told his had infantile spasms. The treatment for the spasms triggered a crash and 7 weeks in PICU. After an MRI, lumbar puncture, CT scan, countless blood tests 2 weeks on a ventilator and two rounds of CPR after he stopped breathing, we were told he wouldn’t come home from hospital and asked if we wanted him to have his remaining time at home or at a hospice.

We went home, in what can only be described as a state of denial to be honest, and did our best to enjoy every moment with him in our new home. He didn’t die. He, slowly, showed signs of improvement. After 18 months we found out he had mitochondrial disease via the 100,000 genomes project. ‘What on earth is mitochondrial disease?’ We’d never heard of it and had no idea what to expect.

Our beautiful boy lives with mitochondrial disease (mito). Mito is the reason his brain hasn’t developed properly. It’s why he has epilepsy, why he is registered blind, and why he cannot walk or talk. Mitochondria are responsible for producing the energy every cell in the body needs to function. In Toby’s case, those cells don’t work as they should, meaning his body doesn’t get the energy it needs. This affects multiple systems and impacts every aspect of his life.

Toby’s condition is life-limiting, and currently there is no cure.

One of the consultants at RMCH told us about The Lily Foundation. I reached out to Liz who talked me through how The Lily Foundation helps and supports families living with mito, and put me in touch with some other mito families. I’ve never looked back.

The Lily Foundation is so much more than a charity, more than raising awareness and funding research. The Lily Foundation is a family. A family of incredible people that have found themselves in a horrible situation but turn up and support their families and other ‘Lily families’. This is why we want to raise money. To help find research, and to help support other families like ours that are scared about the future.

We live with the reality of mito every day — the uncertainty, the fear, and the knowledge that there are so many unanswered questions

By supporting the Lily Foundation, you are helping to fund crucial research and provide support to families facing this devastating diagnosis. Most of all, you are helping to create hope — hope that one day no family will have to live in fear of mitochondrial disease.