Hattie's friend, 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, his Mummy and Daddy were told he wouldn’t come home from hospital and asked if they wanted him to have his remaining time at home or at a hospice.

They went home, in what can only be described as a state of denial and did their best to enjoy every moment with him in their new home. He didn’t die. He, slowly, showed signs of improvement. After a 18 months they found out he had mitochondrial disease via the 100,000 genomes project.

Mito refers to a group of genetic conditions that disrupt how our mitochondria - the energy producers in our cells - function. These disorders can affect high-energy parts of the body like the heart, brain, muscles, liver, eyes or ears, with symptoms ranging from mild to severe.

Because it is such a a complex condition, it can be hard to explain in words alone.

Click the link below to learn how mitochondria sustain life and what happens when they do.

https://youtu.be/66Tjk8wtJYY?si=V7PWccL-m8Y7GM_p

Toby's family had never heard of it and had no idea what to expect. One of the consultants at RMCH told them about the Lily Foundation. Toby's mum, Katie, reached out to Liz who talked her through how the Lily Foundation helps and supports families living with mito and put Katie in touch with some other mito families. As a family they have 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 Hattie want to raise money. To help fund research and to help support other families like Pup's that are scared about the future. Hattie made the decision to donate her hair in support of Team Pup last year and has been growing it in preparation for her hair cut in June. Hattie will be donating her hair to the Little Princess Trust, who provided free, real hair wigs to children and young people who have lost their hair due to cancer or other conditions.