ChaseSinghDreams

Chase completed our family in 2013, bringing great joy to his big brother Kaiden and to us. We couldn’t have been happier, we had the family we had always dreamt of. Chase was bright, smiling, loved to giggle and laugh – he lit up a room.




When he was around 18 month old, we knew something was wrong. Chase wasn’t babbling, he began having full body tremors, and the doctors had no idea why. It was terrifying. For 3 years, I was helpless as a mom. All I could do was be within arms reach, to catch him as he lost control of his body and fell. Every doctor and therapist was absolutely baffled. His parts worked, but his mind couldn’t direct them. After endless tests, it was discovered that Chase was one of 50 people worldwide that carried a rare genetic mutation. The mutation causes development delays and a debilitating form of epilepsy. Our enemy, this terrible disease, is too rare to have a name, it is known by its gene name which is SLC6A1.

After the diagnosis we felt even more helpless, hopeless and isolated until we met another family with a son with the same diagnosis. We banded together, and we decided to fight for our children. We will not give up, we will find a cure. Chase’s efforts to learn to communicate, jump, ride a bicycle, use scissors will not be in vain. We will find a cure that stop the seizure from progressing and stealing his ability to live a full life.

Chase’s disease is a candidate for gene therapy replacement, which would restore his neurological system function and protect his future.

“These are big, expensive enterprises, and with rare diseases much of the financial burden is put on the families.” -Dr. Minassian, University of Texas




The Cure is within reach!

⦁ Chase’s disease can be treated by gene therapy replacement which would restore every afflicted child’s neurological system. A group scientists at the University of Texas are developing the therapy

⦁ SLC6A1 affects GABA, the largest inhibitory neurotransmitter in the nervous system. The research to cure this disease will directly translate to other neurological conditions such as epilepsy, autism, schizophrenia and ADHD

⦁ One of the worlds leading gene therapists, Dr Steven Gray and Dr. Berge Minassian, is trailblazing genetic replacement therapies for complex neurological conditions including SLC6A1

⦁ This is just the beginning: Success with this therapy could lay the foundation for the more inticrate gene editing of common brain conditions involving multiple genes that are either mutated or missing. “There is a logic to what we’re building here,” said Dr Berge Minassian, who leads UT Southwestern’s gene therapy center. “And it starts with these rare conditions. If we can fix one brain disease it opens the door to treat literally thousand of diseases by delivering a single gene and essentially making the brain whole again”.




Where will the proceeds go?

All proceeds will go to fund SLC6A1 research at UT Southwestern. We are strictly volunteer based moms working towards a cure.

Why is the disease so rare?

The gene that causes this disease was discovered in 2015 and doctors didn't begin testing for the disease until late 2016. There are likely thousands of people with this disease, but they don't know they have it. Part of our mission is to raise awareness so we can reach more patients.