Your friends are fundraising. Don't miss out, opt in.

£15,566
raised by 217 supporters
Donate
James Simmons avatar
James Simmons

Remembering Jemima Simmons

Fundraising for Dravet Syndrome UK

£15,566
raised by 217 supporters
Donate

Dravet Syndrome UK

We fund medical research & raise awareness to help families living with DravetSyndrome

Charity Registration No. 1128289

Story

Thank you for visiting our daughters page and if you have time please see the video of our memories of her http://www.youtube.com/watch?v=3YMHRdN3txU

We have set this up to raise money for Dravet Syndrome in the memory of our Daughter Jemima Simmons, Olivia and James’s daughter who passed away the day before her 2 birthday on 8 October 2010 from a rare and catastrophic type of epilepsy called Dravet Syndrome which claimed her life the day before her second birthday on 8th October 2010.

In Jemima's case she had her first seizure at 6 months of age. Dravet children have multiple types of seizures and are notoriously resistant to medication, Jemima for example was on 3 daily anti epileptic meds and still had unprovoked seizures and development. The cause of Dravet is a gene mutation, there is no cure however and approximately 1 in 5 Dravet children will die in childhood

Children with Dravet are at an increased risk of SUDEP (Sudden unexplained death in epilepsy) as was the case for Jemima who went to bed one night after a normal, happy day and simply never woke up. 

After Jemimia's death we received so much support, with everyone asking us how they could help, so we set up this page to raise money for Dravet Syndrome UK (formerly the IDEA league) a charity that helped us throughout Jemima's short, sweet life. 

Drave Sydnrome UK is a partnership of parents and professionals that work closely together, they have 3 main aims;

-To fund medical research into the condition; the money we have raised already has contributed to a research study into early mortality and cognitive impairment in Dravet, but there is much more research that needs to be done

-To raise awareness of the disease amongst the medical community

- To provide support for families; we know how consuming, heart wrenching and what a full time job it is to care for a child with Dravet, and families need support, information and resources. 

Please give whatever you can spare and take a lot at Jemima’s video http://www.youtube.com/watch?v=3YMHRdN3txU

 

 

 

Photos

4
  • +2

Supporters

217