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The Smooth Sanctuary With Paul Phear 6pm - 10pm
3 October 2018, 15:15 | Updated: 5 October 2018, 16:36
Global’s Make Some Noise supports brilliant, small projects across the UK, which help youngsters and their families with illness, disability or lack of opportunity.
These charities struggle to get heard, so we unite some of the biggest radio stations in the UK to give them a voice and raise money to support their amazing work.
The Lily Foundation is a national charity dedicated to fighting mitochondrial disease, a debilitating and 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.
Global’s Make Some Noise aims to raise at least £30,000 to fund 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. This will be a contribution towards 4 Family Support Roles.
Smooth's Paul Phear spoke to the charity's CEO and Founder, Liz Curtis about her family's story. Watch a clip from the interview above.
The Lily Foundation was founded in 2007 by Liz in memory of her daughter Lily, who died from mitochondrial disease at eight months old.
Finding little in the way of specialist knowledge or support available to help her through her ordeal, Liz set out to provide answers for herself and others in her situation.
Paul also spoke to Louise and James Ormrod, parents to Freddie, who was diagnosed with mitochondrial disease when he was 8 months old.
It was a very scary and isolating time for Louise and James, and shortly after Freddie’s first birthday, Louise contacted The Lily Foundation as she wanted to be connected to families that were going through what they were.
Louise regularly speaks to the staff and other parents supported by the charity, asking questions about new symptoms and to get tips or advice.
Louise, James and Freddie went to the Lily Family Weekend in 2017 to spend time with other families and meet medical professionals in the mito field to learn more about the diseases and ask questions. Sadly, Freddie was taken ill the night they arrived and they spent the entire weekend in the local hospital. The were determined to make it to the weekend this year, with no hospital admissions to disrupt it!
Louise finds enormous comfort in being able to talk to people who know, first hand, what it’s like to live with mitochrondrial disease: “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."