Pueblo mother pursues cure for young son’s rare disease

A mother’s love is a powerful thing, and Pueblo native Amber Freed is proving that in her quest to help her baby boy.

Freed’s love for her 2-year old son, Maxwell, is making the impossible possible.

“Maxwell is the snuggliest, sweetest little boy you’ve ever met,” said Freed. “He is just full of life.”

Just 4 months after giving birth to twins, Riley and Maxwell, back in 2017. Freed noticed something was different with her son.

“While Riley was reaching for toys and trying to play, Maxwell just couldn’t use his hands,” said Freed. “It was almost like he was trapped in his body. His arms were drawn up very close, and he looked scared.”

Freed and her husband visited dozens of doctors to see if there was something wrong. Many told the two that Maxwell was fine.

But nearly a year ago, doctors discovered that Riley had a rare neurological disease called SLC6A1. It’s a disease with comparable symptoms to that of ALS or Parkinson’s Disease. Riley is just one of 34 people in the world diagnosed with the disease.

“It was the absolute darkest moment of my entire life,” recalled Freed. “It was a sadness for which there truly isn’t any words.”

The diagnosis only worsened when the Freed family were told that there was no known cure.

Amber wasn’t going to let that deter her.

“I’m not going to accept that for my child,” said Freed. “I asked, ‘If this was your son today what would you do?’ And they said to start calling scientists.”

That’s what she did.

Freed quit her job, researched, contacted hundreds of gene therapy scientists around the globe asking for their help in finding a cure.

Today, one of the fields top scientists is heading the research into finding that cure through gene therapy.

However, funding is needed to keep the research afloat.

So far Freed has raised more than half-a-million dollars towards the cure, but there is still a lot more work and money needed.

“The first hurdle is to raise $1 million to get the treatment off the ground,” said Freed. “With an ultimate total of raising closer to $4 million.”

If this therapy isn’t found, Maxwell’s condition is expected to deteriorate significantly when he reaches the ages of three and four.

Freed says this gene therapy treatment could change the lives of many more. SLC6A1 is linked to autism, epilepsy, and schizophrenia.

“The attention we’ve brought on the disease has opened up so many other doors and the research we are creating will drive research for so many others,” said Freed.

The Pueblo native has already received a ton of support from her hometown, and says she is beyond grateful for the helps she has received thus far.

“There is no place like Pueblo,” said Freed. “Pueblo is family to me. It is a town built on small town values, and they protect their own. The people of Pueblo have stepped up like no other to help Maxwell and my family.”

If you’d like to help with this incredible cause you can visit the Gofundme page.