Team Hope
Meet Hope – a much-loved daughter, little sister and a true fighter.
Hope, 16, is from Swindon and lives with a rare, life-limiting mitochondrial disease called Pyruvate Dehydrogenase Complex Deficiency. Her body cannot process carbohydrates for energy, so she relies on a strict ketogenic diet that keeps her well and prevents the hundreds of seizures she once had every day.
She’s registered blind, uses a wheelchair, is unable to speak and needs 24/7 care to manage her complex medical needs. She’s endured more hospital stays, ambulances and operations than anyone ever should.
And yet – true to her name – Hope shines.
She’s not defined by her condition. She didn’t hear the doctor who once said she would never walk or talk. Today, at 16, she’s learning to walk with the support of a frame, and although she can’t speak, she uses her ‘talker’ computer to make her wants, needs and personality known loud and clear.
Hope has a radiant smile. She loves her family, sunshine and the feeling of wind on her face. Her favourite things are swimming and listening to stories – all day long. She inspires everyone around her and reminds us daily what truly matters in life.
Hope’s parents are keen runners, and when she was small, they began taking her out in an adapted running buggy. She’s since taken part in Parkruns, local races and half marathons.
Supported by friends, family and the local running community, Team Hope has already raised over £43,000 for The Lily Foundation through cake sales, plane jumps, Parkrun takeovers, running events, discos and more.
The Lily Foundation gives Hope’s family something priceless: hope for Hope’s future. Their research projects push forward vital understanding of mitochondrial disease. They funded Hope’s larger adapted running buggy, helping Team Hope continue their adventures. But most treasured of all are the family weekends – bringing together medical experts, families and the extraordinary ‘Lily family’ fighting side by side for children like Hope.
They’re fighting for Hope. We’re fighting for Hope. And with your support, her story continues.
How to support Team Hope
Hope’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
