Colorado mom on crusade to end rare disease receives helping hand from high school students

At a high school pep rally you would expect to see cheerleaders and mascots, but you wouldn’t expect to see a 6-year-old. On Wednesday at Grandview High school in Aurora, their guest of honor was 6-year-old Maxwell Freed.

“Having him back was really special to us,” said senior class president, Bella Stroup.

Maxwell and his friends Charlie, Jaxon, Reilly and Will are Grandview’s adopted children this week. They all have a very rare disease only known as SLC6A1. It causes developmental disabilities, a movement disorder, and epilepsy. The reason they are here today is because of the hard work of Maxwell’s mom, Amber Freed.

“I never thought we would be here,” she said.

Shortly after Maxwell was born, she started “Milestones for Maxwell,” a nonprofit aimed at finding a cure for the disease that affected only 40 people worldwide, when he was diagnosed.

Since then, she has raised money to fund research for treatment and a cure.

In 2020,  her organization’s efforts found a treatment for the disease that helped kids like Maxwell to develop. But the cure, a gene therapy, remained out of reach because research had to stop during the COVID-19 pandemic.

“That was kind of something that was like really sad to hear,” senior Will Lujan said.

Today’s seniors at Grandview were nearly as devastated as Amber was.

They helped raise nearly $50,000 for Milestones for Maxwell when they were freshmen in 2019. Now that the pandemic is over they decided to have him back.

“Finally, we got to see him today and seeing him do well is really special to us,” Lujan said.

They are once again raising money for his organization. Their minimum goal is $15,000 and Amber is grateful.

“It’s a really humbling experience to be here,” she said.

The kids got plenty of cheers, a dance show and gifts to take home at the assembly held on Wednesday. Amber says any money they get is appreciated.

“We’re not going to stop until our miracle happens, which is gene therapy. And I think once that trial starts, I’ll able to look back on this and feel successful,” Amber said.

Maxwell was just happy to be there.

“Best day ever!” Maxwell exclaimed.