Fight for Reilly

After a couple developmental questions we had at Reilly's 6 month check up that turned to multiple children's hospital visits and endless unanswered questions and lots of therapies. This long and brutal year and half stretch brought us to a diagnosis this January of autism and global developmental delay. Just two days after we got this news Reilly had her first day of uncontrollable seizures that led to flight for life trip and multiple nights in the E.R., ICU, and neurology wing at children's hospital. This was beyond terrifying and really did not end with much clarity. It did fast track some genetic testing and shed some light on SLC6A1. Our sweet Reilly Bea has an incredibly rare genetic disorder. It is so rare that is doesn't even have a name. As of now it is just identified by the effected gene, SLC6A1.

Symptoms of SLC6A1 include debilitating epilepsy, intellectual disabilities, physical limitations, behavioral issues, and autism. Needless to say these are a lot of things that are having a huge impact on our little girl. Reilly is a burst of light in our lives, and she along with her older sister Mackenzie are the most important part of our lives.

We will continue to fight for Reilly and all the SLC6A1 kids so that they can live their best life.