What it felt like when we learned our child has SLC6A1?
When Danika was first diagnosed it felt like a bad dream that we couldn’t wake from. This was followed by complete helplessness and grief over the life we thought she would have. It was truly the worst moment of our lives.
How did you know something was wrong?
Danika met her milestones late and with great effort within her first year of life. She showed little to no interest in toys or other common baby activities like “peek a boo”. Danika also had a hard time transitioning to solid foods and gaining weight. After her first birthday the gap widened, and she walked late (at 22 months). She fell often, which was followed by slight jerking motions like other SLC6A1 parents describe. This specific walking and falling observation led us to Children’s Hospital.
The hardest part of being an SLC6A1 family?
The hardest part of being an SLC6A1 family is the fear of the unknown and lack of information. It is hard to cope and prepare for Danika’s future, so we take rest in her good days and celebrate every new thing she learns.
What are your dreams for Danika?
Our dream for Danika is that she will be happy and healthy. We want her to live her BEST life and to achieve all her goals and dreams like any other child has the chance to do.
Why would you like people to donate to Arthurs Quest?
By donating to SLC6A1, vital research and life changing technology can be made possible. Our family will be forever grateful for any donation- whether big or small! Danika’s life and the lives of so many others are positively affected by your gratitude.