27 Oct Callum’s Superhero Story
Callum is a SLC13A5 Superhero. Here are a few fun facts Callum’s family shared with us!
- Name: Callum
- Age: 5
- Homecountry: UK
- Callum loves to be outside exploring or going in the car.
- He loves horse riding and swimming.
- He also likes to spend time on his iPad.
- Callum loves school and enjoys going on his school bus. He enjoys messy play at school!
- He enjoys riding on his trike, playing with cars, looking at books, and going on bike rides.
- Callum’s favorite animals are horses and pigs!
Callum’s Medical Journey
Callum’s journey started an hour after he was born. He started having focal seizures and had his first tonic clonic seizure at 24 hours old. He was transported to the neonatal intensive care unit, an hour away from our home.
Callum’s seizures continued, even on multiple anticonvulsant medications. He could be seizure-free for 48 hours then suddenly have up to 50 seizures a day. This continued for about 3 weeks. He had an MRI and EEGs which showed he had white matter damage on his brain and constant seizure activity.
At 6 weeks old we were finally allowed home. He didn’t have more seizures until he was 6 months old, at which point it all spiraled out of control again. He was given a rescue medication many times. We had regular ambulance trips to the hospital with lengthy stays. Callum’s development started to be noticeably delayed. He was put on another medication which helped but didn’t stop the seizures. He was weaned off another medication that made him extremely drowsy and gave him a horrible rash.
Callum spent 42 weeks in the hospital before he was 10 months old. He eventually had a lengthy stay at a children’s hospital and a genetic test was done. We tried different medications and finally found a good combination that worked. After many tests, doctors decided to insert a vagal nerve stimulator. This was performed when Callum was 21 months old and since that date he has only had 3 seizures!
But seizures are only one part. Callum still has struggles and is delayed. He is doing well in school, trying to sound his numbers and colors. He can walk short distances, but has poor coordination and balance. He has partial hypodontia and his back teeth are all pointed. He is only partially sighted.
Although these are definitely big issues, compared to where we started he is doing amazing and works each day to keep up. He is a fun and cheeky boy who enjoys everyone and everything around him! He has no fear and wants to give everything a go. We are proud of him and hope one day we can find a cure so he can live a better life.