What it felt like when we learned our child has SLC6A1?
We felt relieved that we finally had an answer, but also an immense fear of the unknown.
How did you know something was wrong?
We noticed it took Jack several months to be able to support his head on his own. He sat up unassisted at 10 months, and began walking at 22 months. Around 1.5 years old, Jack was falling for no apparent reason. We also found that he had low muscle tone and wasn’t talking much. It took several rounds of testing, and advocating for Jack, before we received the answers we sought.
The hardest part of being an SLC6A1 family?
I suppose the hardest part is the unknown. We have no idea what Jack’s future will look like. Will he be independent or live with us? Will he continue to learn or will he experience a slowing in this area? Another difficulty is that his condition doesn’t always present physically; he looks just like any other child. Because of this, we sometimes experience judgement from others when he acts out in public. People do not understand what Jack is experiencing internally.
What are your dreams for Jack?
Our hopes and dreams for Jack is that he will always be happy. I want him to be able to live his best life and be free of seizures and other such issues. I hope that he can be independent and realize what huge contributions he can make to this world as an extremely social, very funny, and affectionate little boy.
Why would you like people to donate to Arthur’s Quest?
Donating to SLC6A1 helps children like ours have the opportunity to live a full life that everyone deserves. Donating provides funding for research continue and a cure to be pursued. Without the generous donations that Arthur’s Quest and SLC6A1 Connect have received, we would not consider a cure for our precious Jack to be possible someday.