María Rós’ Superhero Story

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

• Name: María Rós
• Age: 18
• Homecountry: Iceland
• Maria loves to go to the animal park and the monkeys are her favorite.
• She loves almost every animal and she had her own dog for 12 years and the dog’s name was Star.
• Maria loves baking and cooking.
• She loves to listen to music very much but she doesn’t watch television at all.

María Rós’ Medical Journey

The pregnancy and birth was no problem at all.

María Rós was eight hours old when she got her first seizure and she was in the emergency department for a month or more. After we got home she still very often went to the Children’s Hospital because she was never seizure free and she had bad lungs and pneumonia often. She also started to have grand mal seizures very often. When María Rós was 11 years old she got her diagnosis of SLC13A5 and she was the second child in Iceland to get this diagnosis. At around 14 years old the seizures were more stable. Currently, María Rós isn’t getting as many seizures as often, only when she is sick.

María Rós went to children’s school for special children when she was six years old until she was 16 years old. Then she went to high school for special children and she loves the school! After school she goes to daycare for special children and she also loves it. She loves to be with other people to play and have fun. She is very social and always wants to be wherever there is the most fun. María Rós will be in this school until she is 20 years old.

She receives physical therapy once a week, as well as occupational therapy and sees a developmental therapist in school.

When María Rós was six years old she took her first steps and she hasn’t stopped since. She can walk 1.5 to 2 km alone but she always takes the wheelchair with her when she goes for a longer walk.

She speaks a lot, but not everyone understands her… but she still finds a way to let people know what she means. She is getting better every year.