Roos’ Superhero Story

Roos’ Superhero Story

July 9, 2023 Update

We deeply mourn the loss of Roos whose life was tragically cut short by complications arising from SLC13A5 Epilepsy. Our hearts ache with profound sadness, and we extend our heartfelt condolences to the family during this difficult time.

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December 12, 2022 – Original Superhero Post

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

  • Name: Roos
  • Age: 10
  • Homecountry: Netherlands
  • Roos loves to swim in the sea.
  • She loves to cycle with the wheelchair bike.
  • Hot chocolate with whipped cream is Roos’ favorite — even on a hot summer day.
  • Roos is very nice to her sister and brothers. Sometimes she also likes to tease her sister and then is extra nice when her sister screams.
  • Roos eats very well for the babysitter, but refuses this at home.

Roos’ Medical Journey

After a smooth delivery, our daughter Roos was born on October 17, 2012. When Roos was one and a half hours old, she had her first seizure. She turned completely blue and was taken by the pediatrician. The seizures kept coming and the doctors didn’t know what to do. Roos was transferred to another hospital, where she had several tests, including an EEG.

Roos’ seizures kept coming and the doctors were unable to control them with various medications. After talking to the chief physician, we were told that things were not looking good and that we should be prepared for the possibility that Roos might die. She continued to have status seizures for about a week and a half and was then transferred to a university hospital because her doctors did not know how to help her.

After seven weeks of searching for the right medication, we were allowed to take Roos home. This was a very uncertain time because we were very afraid that the seizures would come back. Roos’ seizures happened regularly in the years that followed. She was rushed to the hospital by ambulance and stayed in the intensive care unit for a number of weeks. We thought several times that Roos would not make it. Miraculously, she recovered every time.

Roos was two years old when she was diagnosed with SLC13A5 Epilepsy. I was 21 weeks pregnant with our second daughter when we were told SLC13A5 Epilepsy is a hereditary disease and that we had a 25 percent chance that our unborn daughter could also have this genetic condition. Fortunately, this was not the case. Roos’ two brothers were born in 2020 and 2022 – that took some getting used to in the beginning, but now they are all crazy about each other.

Roos is a beautiful, sweet smart girl with a good sense of humor and who understands almost everything. She is learning to communicate with an eye computer and is also practicing driving an electric wheelchair. She operates the wheelchair with her head because she has dystonia and it is very difficult for her to use her hands.

Roos goes to a Mytylschool, a school for children with disabilities in the Netherlands. They try to teach Roos all kinds of things, but that is sometimes quite difficult because Roos likes to decide for herself what she does and does not do. Roos can be very difficult in her behavior; if she does or does not want things, she can make sure that she has a dystonia attack. Her whole body then goes into a cramp, which is very painful for her. Roos cannot stop the attack because her body takes over and we then need to give her midazolam to help get her out of the dystonia.

Sleeping challenges are common and Roos can often be awake for hours at night. She may start shouting very loudly and will continue until someone comes to see her. Often, Roos will then laugh and is proud that you are there again to be with her.

Roos sleeps a few times a week with our sweet babysitter Ine (where she always sleeps very well through the night). Roos is a very nice girl but SLC13A5 Epilepsy is quite difficult. Luckily, we have nice people around us who help us.

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Roos’ Photos