Ffion was born on the 4th of February 2014 and she was perfect! on the 7th of Feb we brought our baby girl hope and very quickly noticed something was very wrong! She began to have a number of seizures. After weeks in the hospital, countless sleepless nights and lots of trips to GOSH, she was diagnosed with a very rare form of epilepsy called epileptic encephalopathy.

Ffion would have up to 50 seizures a day and needed 24hr round the clock care. Although we were the 2 people in the world that were meant to protect her, there was absolutely nothing we could do to make it stop and it was utterly heart wrenching to watch. I literally felt like my world was falling apart!! 

Without the support from the neurologists and trialling lots of different medications for her, this would still be the case today. Knowledge is power and thanks to the research that charities like Young Epilepsy have conducted, breakthrough medicines have been created which has meant Ffions seizures are now more controlled and she has been given a better quality of life.

Young Epilepsy is the national charity working exclusively on behalf of the 112,000 children and young people aged 25 and under with epilepsy and associated conditions. 

They exist to improve the lives of children and young people with the condition to enable them to fulfill their potential and ensure they have the best quality of life.

 With over 100 years expertise it provides world class diagnosis, assessment and rehabilitation for children and young people with epilepsy. The charity also carries out research into the condition and how it can be treated.

It has a unique blend of specialist services including a school, college and residential services providing education and healthcare for children and young people with epilepsy, autism and other neurological conditions.The charity provides a range of support and information for parents, children and young people and training for professionals. It campaigns for better access to, and quality of, health and education services, and to raise awareness and increase understanding of epilepsy.

Young Epilepsy has developed a new range of services since 2008 including our helpline, health information resources, training courses for professionals in health, social care and education and the promotion of good practice in schools.

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