CHILDS NAME: Annistyn
CURRENT AGE: 2 years old
HOMETOWN & STATE: Abilene, TX
DIAGNOSIS DATE: March 2021
PARENTS: Sheryl & Elen Thorn
What it felt like when we learned our child has SLC6A1?
Our oldest daughter, Avaleigh, was diagnosed with SLC6A1 the year prior which stunned us beyond words and threw us into a grieving process that most of our friends and family could not relate to. Watching Annistyn grow and miss milestones, she seemed to be following in her sister’s footsteps. However, Annistyn’s delays seemed more pronounced so when genetic testing confirmed that Annistyn too had SLC6A1, it did not come as a surprise to us. We still cried because as any parent with an SLC6A1 child, we just didn’t want this for our child. The struggles faced on a daily basis challenges the body, mind and spirit of both parents and child.
The hardest part of being an SLC6A1 family?
The first round of SLC6A1 with our oldest daughter, we noticed that we didn’t have much of a support group and that was very hard on our family in the beginning. But connecting with other parents through the Facebook SLC6A1 family support group has really helped us immensely. But with Annistyn, the hardest part of being an SLC6A1 family is seeing and hearing how people compare and label the two sisters. Everyone looks at Avaleigh and says, “OK this little girl has SLC6A1. I can see the delays but she seems like a happy, high energy 3 year old.” And automatically, everyone thinks that Annistyn is just like Avaleigh which she is not. Not only does Annistyn fight SLC6A1 but also autism which is secondary to it. Her challenges are doubled and her abilities are halved. Her needs are different. Her behaviors are different. She has absence seizures where Avaleigh has no seizures. Everything about these two sisters is different but people just cannot grasp this concept. They think SLC6A1 is something like the flu where flu symptoms are headache, fever, sinus congestion, fatigue. But SLC6A1 does not have symptoms that are across the board. People don’t know what a beast SLC6A1 really is and how this beast effects children differently.
What are your dreams for Annistyn?
We want Annistyn to be a happy and healthy child and to have a chance for a normal life. We don’t want her to be seen for her disabilities but be seen for the radiant personality she has. We want her to become a functional person in society where her dreams become her reality.
Why would you like people to donate to SLC6A1 Connect?
The only way that our little girls have a chance for a possible cure and a full life with minimal to no challenges is through the donations and support to SLC6A1 Connect. Donations enable and promote research and clinical trials for drugs that help alleviate symptoms and ultimately, a cure. Without donations, our little girls and other SLC6A1 children don’t have a chance.