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Pueblo mother raising $4 million to find a cure for her son

PUEBLO, Colo. (KRDO) -- Amber Freed's son Maxwell has a rare neurological disorder. It's so rare it doesn't go by a name, rather a genetic location: SLC6A1.

Maxwell was 18 months when Amber was told the worst news of her life. Her son would not live a normal life.

"I don't think i'll ever have a darker moment in my life," Freed said. "I knew that I loved him so much that I was truly willing to do anything, even if it meant giving up absolutely everything so that my child could have a chance at life."

His genetic disorder can lead to speech and intellectual disabilities. Freed is hoping she can find a cure before her son begins to experience symptoms in line with epilepsy.

"I was going to fight like a mother. I was going to fight like the third monkey on the loading deck on Noahs ark. It just started to rain because I love my twins Maxwell and Riley with every molecule in my body and I was not about to let this be a story," Freed said.

Freed began a fundraising effort in 2019. Her goal was to raise enough money for clinical trials on a gene replacement therapy. She needs $4 million by January 1st, 2022, or the trials will be tabled.

"He's a perfect candidate for gene replacement therapy and the scientists outlined that you are going to have to quarterback all of the scientific progress on your own," Freed said.

Through fundraisers, online donations and philanthropies, she has raised $3.5 million in two years, just $500,000 short of her goal.

"I have done all of this. I've raised $3.5 million dollars. We are on the cusp of making this a reality for my son but the question is it's come at a tremendous opportunity cost to myself and time away from my child and my personal health," Freed said. "We are so close to getting it done and it's a question if it's going to help my son or it will be too late." 

Donations to Ambers efforts can be made at MilestonesforMaxwell.org or search Milestones for Maxwell on Go Fund Me.

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Sean Rice

Sean is reporter with the 13 Investigates team. Learn more about him here.

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