SLC6A1 is a rare neurological condition in small children that causes seizures, severe movement and speech disorders and intellectual disability. Life expectancy is five years maximum, but most pass away much earlier.

Prevalence: 1 of 34 people worldwide

Amber, Maxwells mom says "We’ve made very little progress in a lot of diseases that affect a lot of people. What we’ve learned about in Maxwell’s bad gene SLC6A1 is that most of the patients die young or are misdiagnosed. It happens more often in the US than you would think. SLC6A1 is the sixth cause of epilepsy, the 10th cause of autism, very closely linked to Parkinson’s, and connected to a major role in psychiatric disorders like schizophrenia, bipolar, and ADHD."

When Amber, was told there was little information and no treatments for her son or the condition he has, she says she turned into a mother bear protecting her young, and called over 300 scientists and eventually connected with Dr. Steven Gray from the University of Texas Southwestern. She then took a redeye and flew to DC and talked her way into the National Institutes of Health Conference. Dr. Gray was sitting alone in the front row getting ready to speak when he recognized her and she convinced him that he needed to help her son.

Dr. Gray specializes in a unique gene substitution therapy which delivers a working gene to the SLC6A1 location to replace the gene that is defective.

The family is currently living near Dallas, TX to be close to Dr. Gray and a University research trial, which will hopefully cut through government red tape soon to treat Maxwell within a year.

Meanwhile, outings help the family cope with the stress they face and donors to Courageous Faces Foundation provided them with a year-long, unlimited pass to the Dallas World Aquarium. Maxwell and his sister, Riley, love fish and the sea creatures there and now enjoy the repeated visits they get while living away from Colorado family and friends.