Amber Freed has gone lengths in doing almost everything from quitting her job, putting up fundraisers and now moving in to Frisco to reach out to scientists and doctors there for the treatment of her son Maxwell according to a Dallas Morning News article from November 26 which reports,
“The Freeds put their own retirement funds into the research then started the SLC6A1 Connect nonprofit, which has provided a virtual community for the growing number of families dealing with this disorder. Over three years, Amber has raised $3.1 million — much of it through a GoFundMe but also with the help of deep-pocket donors.
In May, Maxwell’s family moved permanently to Frisco to be closer to the UT Southwestern-Children’s Health team. Amber works not just with these doctors but with scientists at Vanderbilt, Cornell and other universities and labs.
She believes the research will eventually result in a test for SLC6A1 that is part of a newborn screening panel and offer a gene-replacement treatment before babies ever leave the hospital. Her nonprofit also believes the discoveries can potentially help children suffering from autism, epilepsy and psychiatric diseases.
Dr. Goodspeed described Amber as a force to be reckoned with. “While we’re still pretty far from a cure, really promising things are happening in treatments, and Amber has been the hub of the wheel that has pushed this at warp speed.”
While known diseases have enough data and information as to how to treat it, Maxwell’s case is of a different breed as doctors prior her arrival in Frisco could not identify and treat it according to a KXAN article from November 24 which says,
“Maxwell has a disease that doesn’t even have a formal name, referred to by the gene — SLC6A1. The disease causes developmental disabilities, a movement disorder and eventually debilitating epilepsy. Doctors told Maxwell’s parents that nothing could be done.
“They said ‘give him the best life you can, we have no idea what the future holds, you’re going to become the expert in this disease,’” Maxwell’s mom, Amber Freed, said.”
Amber Freed’s efforts truly show how great and encompassing a mother’s love is and one of her wishes is that her son will come to know that she did everything humanly possible to make him better.