The Lily Foundation is a charity based in Surrey built on the bravery and strength of a little girl named Lily. Lily had a chronic illness called mitochondrial disease, developed at birth. Founded in 2007, The Lily Foundation was started to give hope, answers and support to other children and families facing the challenges of the disease.
Mitochondrial disease is an inherited, chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental and cognitive disabilities, and it is estimated that one in 4,000 people have mitochondrial disease and the progressive disease has very few effective treatments with no definitive cure.
However, The Lily Foundation supports research initiatives at Guys’ and St Thomas’, Evelina Children’s Hospital, Newcastle University, and Great Ormond Street Hospital. By funding this work, the charity hopes that the doctors will be able to get a better understanding of the condition.
In the UK it is thought 10 million people suffer from diseases where mitochondrial dysfunction is believed to be involved, and yet most people have never heard of it. It is vital that the medical community is aware of mitochondrial diseases, and in order to make that happen, the charity fund training of medical professionals.
To further educate, The Lily Foundation runs a schools awareness programme in order to inspire and motivate doctors, scientists and fundraisers of the future. The programme aims to increase awareness and understanding of the disease in the wider community.
Living with a diagnosis of mitochondrial disease can be an isolating situation to be in, both for those directly affected and those around them. The charity can help with those feelings by being available to talk to via phone, email and in person, and the charity can help connect families who can then support each other.
As a team, the charity has personal experience of the disease as well as a comprehensive medical understanding, and so they are well-qualified to listen and support. The Lily Foundation has links with Facebook groups that can offer real support and comfort to people when they need it most.
The charity’s goals are to fund more research to ultimately find a cure and support more people who are affected by mitochondrial disease across the UK, this cannot happen without donations and every penny raised makes a difference.
By Georgia Lambert