I am the mother of Callum, diagnosed with r(20) when he was 7 years old – some 10 years ago. He started with absence seizures which then developed into longer complex partial absences and had to be admitted to Gloucester Royal hospital after having 7 hour seizure. When Callum was 11 he went on the ketogenic diet; high fat, very low carbs. After 10 days he was more alert and after 6 months he came off all medication (he did the diet for 2 years and 2 months). We had a year and a half of him being seizure free and drug free. After the recommended time and Callum becoming a difficult teenager we came off the diet. The seizures started coming back one a week about 10 mins duration initially so he was put onto Acetazolamide but despite upping the dose he is still having daily seizures last 5 to 15 mins. Now Callum is in transition period and waiting for an appointment in Gloucester.
Callum struggles with learning but enjoys 6th form at school. His behaviour can be very challenging at home. We hope he can go into catering, though heat and cold extreme seen to trigger of seizures.
I volunteer for Ring20 Research and Support UK CIO because I want to help.
Callum and I have represented the group at Birmingham Children’s Hospital on a number of occasions and we have undertaken various fundraising activities from a fundraising cake sale afternoon, to Christmas and Easter raffles and putting out collection boxes.