Our charity of the month for June is Dravet Syndrome UK, nominated by Sarah Cunliffe.
Dravet Syndrome is a rare and disabling type of epilepsy which is all the more distressing as is presents in infants and for which there is no known cure.
Sarah nominated the charity as her friend’s son Isaac Halley was diagnosed just over a year ago.
She said: “His parents Iain and Abagael have been through a lot and he’s still only two years old. Abagael cried when I told her we were raising money for the charity because she knows how much of a help it is to families like hers.”
Epileptic seizures in very young children are not uncommon and three quarters of them seem to be linked to a high fever caused by another illness. Sometimes they are just one-off events, but with Dravets the seizures continue and get worse as time goes on.
As the fitting continues, episodes could include:
- Myoclonic seizures which are single or multiple muscle jerks, which may involve one part of the body or the whole body
- Atypical absences in which the child will stare without focus and experience a brief loss of awareness
- Focal seizures, which may also involve loss of awareness
- Non-convulsive status where the child develops a groggy, poorly functional state
- Serial seizures or status epilepticus. This is either a single prolonged seizure or a cluster of shorter seizures with little or no recovery in between
The most serious is status epilepticus where quick medical intervention is needed to reduce risk of damage to the brain and breathing difficulties.
As the child continues to grow its development slows down or regresses, sometimes severely. Features of autism and attention deficit hyperactive disorder (ADHD) may become apparent and mobility issues, especially with walking, can occur.
While children with Dravets are at higher risk of sudden unexplained death, they have an 85% chance of surviving to adulthood.
No known cure
There is no known cure for Dravets and treatment focuses on controlling and minimising the seizures. Anti-epileptic drugs are used, but are not always effective.
Spokesperson Teresa Finch said: “Dravet Syndrome UK are both delighted and grateful to have been chosen as Gladstone Brookes charity of the month. The donation received will indeed make a difference and help us to continue to support families affected by this devastating condition.”
It is a very small charity, founded in October 2008, by parents looking for support and information about treatments and research, all of which was sadly lacking in the UK at that time. It has three primary aims:
- supporting the families of sufferers emotionally, practically and financially
- funding medical research into the syndrome and other related epilepsies
- raising awareness of the condition within the professional community
Kelvin Hughes was the charity representative who received the donation and he has a nine year old son who suffers from the disease.
He said: “We went through four years of not knowing what was causing the epilepsy and then he had the genetic test which showed it was Dravets. Now the epilepsy is under control, but as with many other sufferers he is experiencing different problems.
“Our charity is only a small one and we are very grateful for generous donations such as this to keep our work going.”