Amber Freed is the mother of a child with epilepsy from Denver, Colorado. In this Voices For Epilepsy interview, she discusses the birth and growth of her twins. She became concerned that her son, Maxwell, was not reaching the same developmental milestones as his sister. Amber sought medical attention and was able to identify that there was a mutation in a gene – the SLC6A1 gene – which explained all of his developmental struggles. This gene is also known to be a risk factor for epilepsy. There is no cure – to date – for this form of epilepsy. With this diagnosis, Amber began to educate herself about SLC6A1 and what to look for in Maxwell. She learned that he would have seizures in a year or two.
She decided to stop her job and has tirelessly worked to find a cure for SLC6A1. Amber has formed a foundation called SLC6A1 Connect and has raised funds to support research.
Amber provides messages of hope in her interview and encourages everyone not to give up. In addition, she gives tips to parents who find that their child has epilepsy. Watch, listen and appreciate the incredible efforts Amber has gone through to energize families and the epilepsy research community.