NAME: Lily
HOME TOWN & STATE: Lockport, IL
DIAGNOSIS DATE: December 2025 at 11 months old
PARENTS: Maria and Conor Nelson
SIBLINGS: Leo
What did it feel like when we learned our child has SLC6A1?
Heartbreaking. To know that Lily will have a more difficult life than her big brother Leo and other children around her is heartbreaking. As parents, from the moment we meet our babies, we know we would sacrifice anything to give them the best life possible while also ensuring their health & happiness. While we initially completed genetic testing as a last resort to rule out a neurological disorder, our world stopped when we received Lily’s SLC6A1 diagnosis just two weeks shy of her 1st birthday. It is a strange feeling when you grieve the future, but that is exactly how it felt. We don’t know yet what Lily’s future will hold, but we will continue to fight for her future and give her the best life possible.
How did you know something was wrong?Â
At around 3 months old, we noticed Lily seemed a little behind in hitting milestones. At 6 months old, we brought it up to our pediatrician and were assured that all babies develop at their own pace. At 9 months old, we insisted on neurologist, audiologist, and ophthalmologist referrals to rule out any serious issues. At this point, Lily continued to show no interest in toys, food, people, and even the TV. She was unable to crawl, roll over with ease, grasp food or toys, or sit without falling over. She did not respond to loud noises such as the blender, her big brother, or loud clapping. Her hands were always clasped in front of her and she was always looking down with no curiosity in what was going on around her. After ruling out hearing loss and vision issues, we were sure that it was something more serious and ordered genetic testing.
The hardest part of being an SLC6A1 family?
While we are still in the early stages of our diagnosis, there are two things that have been the most difficult for our family. The first is not knowing what the future holds for Lily. Every child is so unique, so it is impossible to predict what her future will look like, how severe her symptoms will become, what limitations she will have, etc.
Another challenge we have faced being a special needs family is that oftentimes people shy away from uncomfortable situations. While we recognize that Lily’s diagnosis may be uncomfortable to discuss, it is so important to talk about so that we can raise awareness of SLC6A1 and ultimately cure Lily and all other affected children. Everyone’s life has ups and downs, but that is just life. This is our life and we welcome the tough conversations and we beg for acceptance, understanding, and love as we face new challenges and overcome obstacles.
What are your dreams for Lily?
Our dream for Lily is that we can give her a normal, happy life where she is accepted by those around her despite her limitations or differences. We hope that she continues to excel in physical, occupational, speech, & developmental therapy, continues to receive all the snuggles and attention from family, friends, & neighbors, and continues to feel loved and supported for the rest of her life.
Why would you like people to donate to SLC6A1 Connect?
Donations lead to research, and research gives kids like Lily options and hope. Hope exists through a gene therapy cure, where funding is currently the only obstacle preventing the next round of children from receiving treatment. If you are blessed with the ability to give, your generosity can give Lily and all other SLC6A1 kids a chance at a normal future.