My name is Sammy,
I am 15 years old.
I had my first tonic clonic seizure at age 1.
It was diagnosed as febrile heat convulsions.
By age 7 the seizures became uncontrolled and I was given a diagnosis of mosaic Klinefelter syndrome and GEF+.
As years went by no medication (tried 5) has reduced the seizure rate.
I have had seizure patterns change from mostly nocturnal tonic clonic seizures to many different seizures.
This led to a drowning episode due to seizure during my swimming lesson and time on life support 🙁
This episode changed my life!
I suffered regression, losing some skills.
I have moderate to severe learning difficulties and my speech abilities vary daily.
I am borderline Lennox Gastaut Syndrome.
The frequency of my seizures being fewer than typically seen in LGS has led to the just borderline diagnosis.
I suffer from NCS and in that state need 1:1 care.
For 4 years I have been on the ketogenic diet.
This has reduced the length of seizures and eliminated drop seizures (which previously gave me weekly trips to A&E with head injuries).
Despite all this I am mostly angelic and happy 🙂
I love to go cycling,
walking and playing football.
I draw and play the piano.
I am the biggest supporter of Liverpool Football team!
I am very loved by my family and carers and hope that one day I won’t have seizures anymore.
Epilepsy Sucks UK has helped me please say thanks and vote for them to help others.