CURRENT AGE: 2 1/2 years old
HOME TOWN & STATE: Los Angeles, CA
DIAGNOSIS DATE: January 2019
PARENTS: Kristina and Michael
What it felt like when we learned our child has SLC6A1?When we first learned of Rowen’s diagnosis, we had no idea what it meant for her. The geneticist simply handed us 1 study that had been performed on children with the same mutation. We were told there were only 34 known cases of SLC6A1 throughout the world. In that moment, we knew we had to do our own research and educate ourselves on this terrible disease. It was an awful feeling; we felt incredibly alone and scared of what our research might reveal.
How did you know something was wrong? We first knew something was wrong when Rowen was not meeting typical milestones. We remember it was so difficult for her to focus on objects and loved ones that were right in front of her.
The hardest part of being an SLC6A1 family? The hardest part of this entire experience is thinking of what the future will hold for our daughter.
What are your dreams for Rowen? Our dream is that Rowen can be cured from this awful disease, and that she has an opportunity to grow to be strong, healthy, and independent. We yearn for the day that she can tell us, in her own voice, that she loves us.
Why would you like people to donate to SLC6A1 Connect? If you donate to SLC6A1 you will not only save our little girl from this horrible disease, but so many other children who will be diagnosed with the same genetic mutation. It will save a multitude of families from the immense worry, heartache, and fear that comes along with this diagnosis. From the bottom of our hearts, we thank you for your donation!