27 Jan Halldóra María’s Superhero Story
Halldóra María is a SLC13A5 Superhero. Here are a few fun facts Halldóra María’s parents shared with us!
- Name: Halldóra María
- Age: 8
- Homecountry: Iceland
- Halldóra loves toasted bread with butter and cheese. Sometimes she only wants small bites, other times only the whole slice and we never know which one it will be!
- She loves to go to the doctor and always brings some real equipment home with her from each visit, so we have a good stock of everything she needs for a REAL doctor game at home.
- Halldóra is a very good horse rider and takes good care of all animals around her, she has a dog and a cat.
- She currently has 5 people helping her. She has so much fun with them, they play nonstop together after school and on weekends. They do all kinds of fun stuff like swimming, coffee dates, going to the mall, figure skating, yoga, walks outside, doctor and doll games, the list goes on!
- She loves to play with her younger brother and nephews, she likes to be their babysitter or teacher!
Halldóra María’s Medical Journey
Halldora’s medical journey is strikingly similar to other SLC13A5 children: I had a normal pregnancy and birth and she seemed just perfect. But when she was 16 hours old, she had a big seizure. She was rushed to the NICU and soon put to sleep with medications so they could stop the seizure. At first, her care team believed she would grow out of her seizures and be okay, but in the coming months she had frequent 2-3 hour long seizures. She also was not achieving her developmental milestones “on time.” We got the feeling this was something more than just epilepsy.
When Halldora was 2.5 years old, we did a DNA test and received an SLC13A5 Epilepsy diagnosis. We found TESS Research Foundation, where the team suggested a new medication that changed her life. The seizures stopped for a while and she started to reach some milestones, sitting unsupported, standing with minimal support, crawling, saying mama and papa—you know, the things you really take for granted with most developing children.
Eventually though, the seizures came back, but they are now milder, lasting from 10-40 minutes most of the time and with 2-3 months between each seizure. Most of the time she recovers quickly and does not lose her abilities, although that still happens sometimes.
She is now walking quite well on her own, but always with human support next to her, just in case. She feeds herself sometimes if she feels up to it, but she is a princess and likes to be catered to.
We have so much gratitude in our hearts for TESS and all the great connections we have made with other families, that are in, as close as it gets, the same situation as we are. It is so valuable to share resources, happy milestones and the hard moments when we feel nobody else really understands.
