NAME: Coralynn Paige (Coco)
CURRENT AGE: 5
HOME TOWN & STATE: St. Michael, MN
DIAGNOSIS DATE: April 2022
PARENTS: Lindsay and Cody
SIBLINGS: Milo (3)
What did it feel like when we learned our child has SLC6A1?
We have experienced a wide variety of emotions surrounding Coralynn’s SLC6A1 diagnosis. Overall, we are glad to finally have answers that tie together all of her former diagnoses and explain everything. It was difficult finding out that not much is known about SLC6A1, but we are hopeful that won’t be the case for long.
How did you know something was wrong?
At around 6 months old, Coralynn started falling behind in all developmental areas. She didn’t have any interest in toys or games like other kids her age. She walked and crawled late (14 and 16 months, respectively). She has never been able to speak any words or use other forms of communication, such as sign language; she is completely nonverbal. We received a diagnosis of a global developmental delay when she was 1. We then started to notice tremors around 18 months old and eventually received an epilepsy diagnosis. Our doctor encouraged us to seek answers in the form of genetic testing after her 5th birthday.
The hardest part of being a SLC6A1 family?
The hardest part for us is learning how to navigate everyday life and make decisions for Coralynn when she can’t tell us what she wants and needs. It is hard to watch other kids her age experience things that she isn’t able to. Every day, we feel uncertain about what the future holds.
What are your dreams for Coralynn?
We want her to be happy and healthy and to be able to experience life to the fullest. We would love for her to be able to communicate her wants and needs and be less frustrated when people don’t understand her.
Why would you like people to donate to SLC6A1 Connect?
We are so hopeful for future treatments and, ultimately, a cure for SLC6A1. Science and technology are amazing and we know something will make life better for all the SLC6A1 kiddos- now and into the future! We don’t want any more families to have to go through what we have.