The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today. Did you know every twenty minutes a child is born who will develop Mitochondrial Disease by the age of 16! There is no cure for this disease which is for many, debilitating and life limiting. Please stand with us and fight Mitochondrial Disease and fight for hope.

Inspired by the wonderful Matilda who has mitochondrial disease, we are fundraising for The Lily Foundation to help them beat mito and give hope. See Matilda's story below.

This is the first event Team Matilda are doing to fundraise for The Lily Foundation, with 12 of us walking the Derbyshire Three Peaks (Kinder Scout, Bleaklow Head and Higher Shelf Stones) over 20.75 miles on Saturday 24th August 2024.

Matilda's Story:

Matilda is a 4-year-old girl who suffered seizures overnight and into the morning of 1st April 2024. This led to her being treated in resus at University Hospital Coventry and Warwickshire and placed in an induced coma for continued treatment at Birmingham Children’s Hospital.

The seizures caused inflammation to her brain, which in turn temporarily caused complications with her eyesight and coordination.

Matilda spent four days on Intensive Care before being moved onto a ward.

Matilda spent two weeks in hospital, where focal seizures continued through to when she was discharged on the improvement of her eyesight and coordination and her return to her normal self. The cause of her seizures was not identified until the results of genetic sequencing returned post-discharge.

The genetic sequencing led to Matilda’s diagnosis of Polymerase Gamma (PolG) - a genetic, mitochondrial disease. Upon receiving this diagnosis, it was learned that the disease is progressive and cannot yet be treated. The progression of this is known to drain the body’s cells of their energy over time causing further diagnoses to muscles and other organs and, at an unknown time, become a terminal illness.

Matilda has been a source of strength in her own right throughout. She has revelled in showing off her improvements since coming out of a coma and being unable to walk or see properly and enjoyed her stay in a ward room and the company of nurses, doctors and physios. Since returning home, she has relished opportunities to enjoy the garden, playing with her little sister and returning to her swimming lessons. Matilda has made her parents and family beyond proud at the start of this journey.