Epilepsy & Life After NCS - NCS Grad. Karis Charley

ncs 10/05/2017

Last year during my summer programme, my group raised money for childhood epilepsy. Everyone who had a charity close to their hearts pitched their ideas, incentives and aims to the rest of the group. We then voted for a cause for our social action project based on impact, the level of existing awareness and how much it meant to the team member that had proposed it.

Childhood Epilepsy and the awareness surrounding it is an issue close to my heart as my younger sister was diagnosed with the condition at the age of six months. During my summer programme, she was going into her first year of primary school. This made me painfully aware of how little people know about the issue, considering epilepsy can affect anyone, at any age and from any lifestyle. As a result of this I chose to put forward a local epilepsy charity called Abbies Love that helps provide much needed medical equipment and support to local families, including my own, after the founder’s daughter passed away from Sudden Unexpected Death in Epilepsy (SUDEP).

SUDEP accounts for 7.5% to 17% of all epilepsy related deaths, and the risk of this in children and young adults has increased 24-fold compared to the general population. Medical experts are still unsure why this occurs and believe it to be from a series of factors ranging from respiratory failure to having seizures alone at night, but they still have no definitive answer as to why this occurs. In my opinion, this highlights the need for greater awareness and greater research to be done since 34% of sudden deaths in children are caused by SUDEP.  

It’s because of these statistics that my group and I were dedicated to raising £240 from a family fun day for such an amazing charity. We hired a bouncy castle and had members of our team design and set up their own game stalls. Other team members contacted local businesses that attended the stalls to support our cause.

Recently, I’ve just finished a project with the ITV charity Fixers, which I met through NCS. They helped me create a resource booklet that helps teachers understand simple safety precautions they can take to help safeguard young children with epilepsy. This is the idea I chose to focus on after seeing other children’s cruel reactions to another classmate having a seizure during secondary school, and the teacher’s lack of training to handle the situation before, during and after the fit. This made me worry for my younger sister’s safety in schools as well as the young children that will be affected by epilepsy in their lifetime. From this booklet, I hope teachers will gain a better understanding of how to handle a seizure and eliminate the stigma that surrounds epilepsy by being able to address the subject openly in front of their class.   

From both of these wonderful opportunities I’ve learnt that we’re all able to raise issues we are passionate about and that there’s always more to be done on important issues that are close to our hearts.