NAME: Camden “Kash”
HOME TOWN & STATE: Vicksburg, MS
DIAGNOSIS DATE: March 27, 2024
PARENTS: AJ and Jamie Barnes
SIBLINGS: Kynsleigh and Emersyn
What did it feel like when we learned our child has SLC6A1?
Absolutely heartbreaking! We were at first diagnosed with Doose Syndrome and had our hopes up that this was hopefully a temporary disorder that he may could outgrow, but then was lead to do genetic testing where we found out Kash had SLC6A1 and this was a lifelong disorder! It’s absolutely heartbreaking knowing he will have to face more difficulty in life than his sister and other children his age! As his parents and family we will sacrifice anything and everything we have to do to make life easier and successful for him! We don’t know what the future holds for Kash, but we will always be a part of it for the best interest of him!
How did you know something was wrong?
We began to notice something was wrong at around 6 months old when Kash wasn’t meeting milestones like he should! At first we thought it was just because he was a boy and every kid develops at that their own pace! At around 7 months old, Kash started having rolling of eyes with head drops and we just knew something wasn’t right! We began talking to his pediatrician and it wasn’t until he was a year old that we found out he had epilepsy after EEG! From then further testing was performed!
The hardest part of being an SLC6A1 family?
The unknown! Not knowing what Kash’s future will look like! At this point we are still not talking and that’s one of our concerns! Will Kash ever be able to tell us his wants, his needs, how he feels, etc! Being parents of a special needs child is often so rewarding though! I have always been told God only gives special children to special because whom he knows can handle them! I have always been aware of special needs children having a sister who is also special needs (Down Syndrome.) We just don’t know what the future holds for Kash and other children with this disorder but want to make the best out of it!
What are your dreams for Kash?
Our hope and dreams for Kash is to give him the best life we can give him! To love him, cuddle him, support him in every way possible throughout his entire life! Currently we are still doing all the therapies for him, occupational therapy, physical therapy, speech therapy, along with early invention schooling! Although he is so sensory seeking, inattentive, and wants to do his own thing during therapy sessions we pray his therapists do not give hope hope, faith, and love for him and continue striving to help him get better in every way possible! We also pray to give people in the community to understand his diagnosis and treat him equally! Just because we are different doesn’t mean you treat us different!
Why would you like people to donate to SLC6A1 Connect?
We would love for everyone to donate not only to Kash, but each and every child that suffers from a rare gene disorder! We are wanting more research to fight for rare disorders and hopefully a cure through gene therapy for SLC6A1! Donations help these children more than you know to give them somewhat of the normal life they deserve!