Jemima suffered from a rare type of epilepsy called Dravet Syndrome which claimed her life the day before her second birthday on 8th October 2010.
We have recieved so much support from family and friends since she passed away with everyone asking what they can do. Throughout Jemima's illness we recieved a lot of support from the IDEA League, so we want to support them.
The IDEA League is an international partnership of parents and professionals that promotes awareness of and research for Dravet syndrome and related forms of epilepsy and provides resources and support to improve the quality of life for affected individuals and families. Their primary objectives are outreach and support for families, education and resources for physicians and research
Dravet Syndrome is a severe form of epilepsy which begins in infancy and affects almost every aspect of a child’s life, it is not easily controlled by medication.
At this time, the treatments available for Dravet syndrome are focused on improving symptoms, via medication to control seizures. Response to these medicines is variable, but often seizures persist despite treatment., the mortality rate of Dravet Syndrome is high with 18% of children not making it to adulthood.
Please give whatever you can spare.
With love, Olivia and James Simmons.
