Henri’s Superhero Story

Henri is a SLC13A5 Superhero. Here are a few fun facts Henri’s family shared with us!

• Name: Henri
• Age: 10
• Homecountry: Brazil
• Henri is very curious and adventurous.
• He loves motorcycles and jet skis.
• He also enjoys to walk.
• His favorite things to play with are his mac computer and pens.
• He also loves books!

Henri’s Medical Journey

Henri was born on February 25, 2012. On the first day of his life we knew something was wrong. He had his first crisis and started to have seizures when he was only a few hours old.

The doctors had no idea what was happening and it was very challenging to process with a newborn baby. We had to figure out why he was having seizures as well as try to understand how to recognize when he was having a seizure. When babies are so tiny, the smallest movement can look like a seizure. On top of all of this, we needed to figure out how to treat Henri’s seizures. After 4 years, Henri was finally diagnosed with SLC13A5 Epilepsy.

Having SLC13A5 Epilepsy is challenging day-to-day, even with very ordinary tasks. Henri originally tried to attend regular school, but he is currently not attending school at all. Henri does attend many different types of therapy including physiotherapy, speech therapy, hydrotherapy, ecotherapy, and occupational therapy.

Currently Henri doesn’t walk on his own, but he can go with support. We are so proud of how hard he works everyday!