On Friday 9th December the national SureCare network will be taking part in their anual Xmas Jumper Day event, to help raise money for The Lily Foundation. With the son, of one of the SureCare team suffering from the life debilitating illness - it is a cause extremely close to SureCare's heart.
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.
What is Mitochondrial Disease?
Mitochondrial Disease is probably the most common disease you’ve never heard of before. It claims more lives than childhood cancer – that’s a fact. Yet so few people are aware of it, because Mitochondrial Disease is often misdiagnosed and misunderstood.
Recent research shows that about one in 200 babies in the UK are born with genetic changes that can cause it, and it can develop at any age. It has been linked to a number of common conditions including Diabetes, Alzheimer’s, Parkinson’s, Epilepsy and some forms of Cancer.
Mitochondria are the ‘batteries’ in all our cells – converting the food we eat into energy to survive. Mitochondrial disease happens when these batteries become rundown. The cells stop performing and start to die, so the bodies organs don’t have enough energy to work.
Mitochondrial Disease can affect anyone. There is currently no treatment or cure.
The Lily Foundation fund vital Medical Research, they raise awareness
of Mitochondrial Disease and they help to provide support for affected families. There is a definite lack of understanding of this disease in the medical professional due to the variability of symptoms and the range of severities. This makes diagnosing mitochondrial disease difficult and treating it even harder. With more research funding, together we can help change that. Scientific learning is moving at such a fast pace however without the funds to undertake the work, we are a long way off
answers for the families we support. Awareness is also key to our mission, as the more people that have heard of Mitochondrial Disease
the more likely it will be considered as a diagnosis when a child presents with symptoms that affect more than one organ.
The Lily Foundation also support affected families living with the disease and families who have lost children, by putting people in touch with each other, through our website and through their dedicated family support team.
With your help - there IS hope!
