About the group
Harry's friends and family.
Our fundraising page.
Fundraising for The Lily Foundation funds research into Mitochondrial Disease and other metabolic disorders. It also
Harry was diagnosed with Leigh's Syndrome, a mitochondrial disease, when he was 21 months old. Due to his condition Harry is unable to walk or talk, has complex epilepsy and his immune system struggles to overcome even simple winter bugs. Despite all of these challenges Harry is literally the happiest little boy we think you will ever meet. Words cannot describe how heartbroken we are and we have had to learn to accept and live with the fact that we are not going to have our beautiful and cheeky little boy forever.
Unfortunately this is the reality for every family who has a child with Mitochondrial disease. We make the most of every single moment we have with Harry who will be 11 later this year. Mitochondrial disease is life limiting and degenerative. There is currently no cure, just supportive treatments like seizure control and physiotherapy. It is a fact that more children die from Mitochondrial diseases than all childhood cancers combined. This is why more research is needed into finding a cure.
When Harry was first diagnosed we had little or no information, but the Lily Foundation changed this. They have supported us from day one and will continue to support Harry and all of our family for many years to come. The Lily Foundation is a wonderful charity that supports families and funds research into Mitochondrial disease with a view to find a cure. We have attended their annual Family Weekends where Harry and his little sisters get to have a fantastic time with other children and siblings affected by mitochondrial disease whilst Mum (Lucy) can attend lectures and workshops about research/treatments/symptom management etc. We cannot express how amazing they have been and how important they will continue to be for our whole family in the future.
On June 8th 'Team Harry' - Lucy (Mum), Oli, Thomas & Erin (Uncles & Aunt), and friends Danielle, Andy, Simon, Leonie, Clare, Simon, Kate, Rosie, Richard and Enrico are going to be attempting the National 3 Peaks Challenge! With a total walking distance of 23 miles (37km) and a total ascent of 3064 metres (10,052ft), not forgetting the total driving distance of 462 miles - this challenge really is no mean feat! We will scale Ben Nevis in Scotland (1345m), Scafell Pike in England (978m) and finally Snowdon in Wales (1085m).
Please help us raise as much as we can for the Lilly Foundation so they can continue to support families like ours and fund research into finding a cure.
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.
Homepage of The Lily Foundation funds research into Mitochondrial Disease and other metabolic disorders. It also.
Challenge registration number:
This challenge is due to take place on
National Three Peaks Challenge
The National Three Peaks Challenge takes in the highest mountains in Scotland, England and Wales, often in 24 hours.
Lucy, Nicky, Thomas, Oliver, Erin, Clare, Leonie, Simon, Danielle, Randy, Harry, Simon, Kate, Richard and Rosie