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North Texas Mom Raising Millions To Find Cure For Son's Rare Neurological Disorder

DALLAS (CBSDFW.COM) - A North Texas mother says she is in a race against time to find a cure for her son's rare neurological disorder.

Amber Freed needs to raise nearly a million more dollars by the end of the year to help advance a key clinical trial at UT Southwestern Medical Center.

When her twins were born in 2017, her and her husband were overjoyed.

"It was the most exciting moment of my life," Freed said. "I had no idea my heart could expand so much it did."

After a few months, she noticed her daughter Riley could do things her son Maxwell couldn't.

"Mother's intuition is louder than a freight train, so we started going from doctor to doctor," she said.

Ultimately, Maxwell was diagnosed with a neurological condition so rare, it doesn't even have a name.

SLC6A1 causes movement disorder and speech and intellectual disabilities, before ultimately progressing into debilitating epilepsy.

Amber and Maxwell Freed
Amber and Maxwell Freed (credit: Amber Freed)

"Everything we had wanted was ripped away from us in a 10 -econd diagnosis," said Freed. "And I just realized in that moment, that if something was going to be done, we had to do it. And I was going to fight like a mother."

Maxwell is now 4 years old.

"Every single day I wake up with this huge fear that today's the day he loses all of the development he has," said Freed.

That's why she's working so hard to find him a cure.

All her research on his diagnosis led her to a team at UT Southwestern Medical Center.

The Steven Gray Lab has pioneered gene therapy treatments for a variety of rare neurological diseases.

Freed has spent the past two years raising more than $3 million to help fund their clinical trial to find a treatment for SLC6A1. The majority of the money has come in $10 and $20 increments through crowdfunding.

If she can't raise another $800,000 before the end of the year, she says some of the research will be halted.

"The most important part about raising the money is the sense of urgency," Freed said. "Our kids don't have any more time to waste. This disease is progressive and my son is a ticking time bomb."

She's hopeful a Christmas miracle in the form of others' generosity will make it possible for Maxwell to receive gene replacement therapy within the next year.

Maxwell and Amber Freed
Maxwell and Amber Freed (CBS 11)

"Once he is treated, I want to celebrate every single day because this is an absolute miracle of scientists and kind-hearted strangers that have made this happen," she said.

Freed said every penny of the money raised will go straight to developing a cure, which could eventually be used to help treat other diseases, too.

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