Bringing families affected by rare illness together for the first time
Mitochondrial disease is a very rare and unpredicatable condition. It can potentially be fatal. Mitochondrial disease can be inherited, but each case is very different. There is currently no cure for the illness, and treatment is limited. There is little medical information available, and what is available is very technical and difficult for families to understand.
The condition is caused when the Mitochondria in the cells of the body are not producing enough energy to power the cell. Sometimes it is because the Mitochondria do not function, and sometimes it is because they do not work very well.
Every person with Mitochondrial disease is affected differently, because it depends on how many cells are affected, and where they are in the body. There can be many symptoms which range from muscle weakness, visual and hearing problems, learning disabilities, heart, liver or kidney disease, to neurological problems and dementia.
Roald Dahl's Marvellous Children's Charity is working in partnership to help The Lily Foundation bring together families affected by Mitochondrial disease for the first time.
Around 50 families whose children have the condition will have the opportunity to attend the day, to be held in 2015.
There will be seminars hosted by leading medical experts,and small group sessions to give families the chance to explore the emotional aspects of having a child with a terminal diagnosis. There will be lots of opportunities for families to mix together and make friends, as well as dedicated nursery staff providing childcare, a special needs sensory area, and mainstream activities for able bodied siblings.
We hope the impact on the families attending will be long lasting. The gathering will give them the support network that they so desperately need, as well as the professional advice that is not readily available.