The Lily Foundation is a national charity dedicated to fighting mitochondrial disease, an incurable life-limiting genetic condition affecting children.
The charity provides practical and emotional support, information and advice, and family support weekends to help over 350 families affected, including those currently living with the condition and those who have lost someone to it. The Lily Foundation also funds specialist equipment for families, and research into diagnosis and treatments to help find a cure.
When we heard about The Lily Foundation, we wanted to help because of children like Freddie, who was eight months old when his mum, Louise, found out he had mitochondrial disease. Louise told the charity:
“Nobody who already existed in our lives had heard of mitochondrial disease or knew what to say to us anymore. It was a scary, and isolating time.
The best thing about The Lily Foundation is being welcomed into a family, a family you probably never wanted to be a part of but, once you found them, couldn’t live without. We all have different journeys with our warriors, but nothing can compare to being able to talk to people who know, first-hand, what it’s like to live with mitochondrial disease.”
Global’s Make Some Noise is very proud to be supporting the Lily Foundation’s Family Support Programme, which connects families in similar situations who understand the condition and can be supported by a wider network.