Story
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PCDH19 Is a form of epilepsy that is almost exclusive to females caused by a chromosome mutation and can leave young people with severe learning and behavioural difficulties. PCDH19 affects those who suffer from it in a very individualistic way with some people suffering from seizures every day to months apart.
Last Autumn my daughter 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 epileptic 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 with the longest lasting 9 and half minutes long.
Lillie’s doctors at the Royal Hospital for Sick Children 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 here in the U.K. 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 on new treatment methods for the condition. Through our Ben Lomond Climb we want to come together as a family to not only to support Lillie, but to raise awareness and support for people who suffer from PCDH19 and there families worldwide.
PCDH19 Is a form of epilepsy that is almost exclusive to females caused by a chromosome mutation and can leave young people with severe learning and behavioural difficulties. PCDH19 affects those who suffer from it in a very individualistic way with some people suffering from seizures every day to months apart.
Last Autumn my daughter 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 epileptic 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 with the longest lasting 9 and half minutes long.
Lillie’s doctors at the Royal Hospital for Sick Children 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 here in the U.K. 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 on new treatment methods for the condition. Through our Ben Lomond Climb we want to come together as a family to not only to support Lillie, but to raise awareness and support for people who suffer from PCDH19 and there families worldwide.