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Mom asking for help raising $1 million to cover costs of clinical trials for treatment of rare disorder

Maxwell Freed
Posted at 4:00 PM, Aug 01, 2019
and last updated 2019-08-02 13:35:14-04

A mother from Pueblo is fighting for her son's life. 2-year-old Maxwell Freed faces a genetic disease which could have devastating consequences as the days go by.

News 5's Jessica Barreto caught up Amber Freed today to talk with her about spearheading an effort to find a cure.

The cure comes in the form of gene replacement therapy, and the complete testing for that would cost nearly $5 million. But Amber has a team of scientists at the University of Texas Southwestern working to test this on mice as part of a pre-clinical trial.

"This disease messed with the wrong mother," Freed said.

Freed hopes the pre-clinical trials on mice will prove successful, so she bring those results to the Food and Drug Administration this fall and start trials on humans.

Two-year-old Maxwell SLC6A1 epileptic encephalopathy. The code is the name for the mutating gene causing the health problems.

At around three years of age, it can lead to a form of epilepsy coupled with regression.

"One thing that people say to me is, 'Take care of yourself.' But whenever I try to sleep, I can just hear a clock ticking," Freed said.
"And I know there's something more I can do."

That's why Maxwell's mother is working to fund trials so the cure can be made available to everyone.

"Time is absolutely of the essence for us. We have a window of time where we can treat him and he would actually be cured from this disease. And he would be able to go on and have every other opportunity that other kids have," says Amber Freed.

Even though Amber lives in Denver now, her hometown community has helped raise $20,000 for to help her reach her goal of $1 million to cover the cost of a pre-clinical trial.

"I just can't imagine what she's going through on a day-to-day basis," said Autumn Dowling, manager of the Do Drop Inn restaurant, where staff have helped organize several fundraising events.
"I just wanted to help in any way and that's a huge financial burden."

"It was really a spark that lit a fire for fundraising for us," Freed added.

But this is only the beginning, and Freed won't stop until Maxwell has the guarantee of living a normal life.

"I'm a mother fighting to help her son have a chance at life. He is my entire world. I will never stop fighting."

If you'd like to donate, visit https://www.gofundme.com/slc6a1-connect