21 Dec Enzo’s Superhero Story
Enzo is a SLC13A5 Superhero. Here are a few fun facts Enzo’s family shared with us!
- Name: Enzo
- Age: 15
- Home country: France
- Enzo’s favorite color is orange.
- He loves motorcycles.
- He loves to listen to music.
- Enzo enjoys going to restaurants and loves to eat cheese.
- Enzo loves the water.
Enzo’s Medical Journey
Enzo presented with seizures 2 hours after he was born. We received his diagnosis of SLC13A5 Epilepsy when he was around 5 years old. He had a lot of different treatments and was very poorly monitored by his neurologist at the beginning. He has delays in speaking, walking, and other areas. Right now, he is unable to walk but is able to crawl, he doesn’t eat alone, he has difficulty coordinating movements, but he is toilet trained and hasn’t needed a diaper for at least 6 years!
He is currently at a center, but the hardest thing for our family is that he is unable to work and be independent. As a separated family, Enzo spends one week with his dad and one week with me, which can be a heavy weight to carry and the daily management can be difficult.
Enzo is a very happy child who is always smiling. He is sociable with people and loves when he is able to sleep at the center. He is currently sleeping very well and has a great appetite — his favorite dish is camembert melted on the barbecue. Enzo loves thrill rides. He also loves animals, especially the donkey and dogs! He really only likes puppies because he wants them to stay small. He understands a lot of things and has a good sense of humor that he expresses in his own way. He is very cuddly and when he loves something, he become obsessed with it!
He has had a lot of hospitalizations but is doing much better since the introduction of a new medication 2 years ago. This has allowed us to stop a different medication and that allowed up to spend 2 years without seizures! Recently, he has had some smaller ones, so we have increased the medication again. I am always more afraid than Enzo that a seizure or something else will happen to him.