Thanks for taking time to visit my just giving page and giving a donation to PCDH19 Alliance. 

PCDH19 is a form of epilepsy almost exclusive to females caused by a chromosome mutation and can leave young people with severe learning and behavioural difficulties. PCDH19 effects those who suffer from it in a very individualistic way with some people suffering from sezuires every day to months apart. 

Last autumn my niece Lillie, then just 3 years old, was admitted to hospital following the onset of a seizure cluster. After 10 days and enduring over 100 seizures, Lillie was discharged from hospital with no diagnosis. This was an extremely distressing time for Lillie and our family, full of fear and uncertainty.  

In early 2018 a genetic test result revealed  that Lillie suffers from the rare genetic condition - PCDH19 Epilepsy. At just 4 years old Lillie struggles with the stress of taking steroids and anti epilepsy medication that affect her mood and appetite. In July of this year Lillie had another seizure cluster that seen her admitted to hospital for 12 days and endured over 70 seizures that lasted up to 7 minutes long. 

Lillie’s doctors at the QEUH are trying their hardest to come up with the best possible medical plan that will help support Lillie and our family through her condition, but with such little research done into the condition in the UK that is no mean feat. The majority of research that has been undertaken is within America and Japan and PCDH19 Alliance are the leading charity aiming to shed light and new treatment methods for the condition. Through our Ben Lomond Climb we want to come together as a family not only to support Lillie, but to raise awareness and support for people who suffer from PCDH19 and their families world-wide.