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.

Please read Tara and Lee's story below who the Lily Foundation have helped directly.

'Hector was born on the 18th November. He completed our family and made Arthur the proudest big brother. He hit all his milestones and was a happy, strong, 'normal' little boy.

At 10 months old he started having seizures out of nowhere. We spent a terrifying month in and out of hospital where doctors couldn't work out what the seizures were or how to control them. On 22nd October 2021 Alpers was confirmed. The day that changed our lives forever. Less than 4 short months later Hector at 15 months old took his last breaths in our arms at home.

As a family it was such a devastating shock to receive his diagnosis but what was even harder was to watch his decline. He lost all of his skills and by the end he could no longer move, smile or swallow. His care was 24/7 but we were still fortunate enough to have him at home and go on some amazing trips to make memories as a family.

The Lily Foundation have provided lots of support and even paid for a trip to Centreparcs for us. They fund research and provide such personalised care for so many families dealing with a wide range of Mitochondrial diseases.'