Drive-by birthday party for 3-year-old with rare disease

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DENVER (KDVR) — Even with a stay-at-home order in place, there was no way Amber Freed was cancelling her 3-year-old twins’ birthday party.

The Denver mother set up an entire party’s worth of decorations in the front yard, complete with a giant blow-up dinosaur, and dozens of balloons.

“What I did was pull out every season’s decorations all at once. We had Thanksgiving, dinosaurs, Halloween, and everything for a birthday,” Freed said, laughing.

She asked friends and neighbors to drive by in their car and wish her twins—Maxwell and Riley—a happy birthday, by honking three times.

“I am going to remember this day and smile so big,” said Amber Freed.

The drive-by style party brought a few hours of joy to the Freed family, during an otherwise time of darkness.

“I definitely was up late last night, trying to piecemeal this party together, knowing that this might be Maxwell’s last healthy birthday—and also knowing that all the progress we made may be falling apart right now,” said Freed, with tears in her eyes.

Maxwell suffers from a rare, genetic disorder—so rare, in fact, it doesn’t have a real name. For now, it’s referred to as SLC6A1 and is similar to Parkinson’s disease.

“In the next year, we’re expecting a debilitating form of epilepsy to begin, that is not treatable with drugs. His 4th birthday—he may lose a lot of the skills he has fought so hard to gain,” Freed said.

A drug, and possible cure, is already being tested on mice.

Gene therapy was set to start later this year, but the timeline has slowed down significantly in the face of the COVID-19 pandemic.

“Only a few scientists can be in laboratory at a time, and a lot of students and PhD’s were working on our projects—and universities have shut down,” Freed explained. “Because universities have shut down, there are just no resources,” she added.

It’s a devastating setback for her son.

“Days and minutes count for us. We need to have him treated soon, or else he will have no quality of life.”

They’ll still need an additional $3.5 million, minimum, to conduct a full clinical trail—at a time where many Americans are now experiencing financial strain.

“I’m so deeply sad that we came this far, and everything was working out perfectly. I was fighting so hard to save my baby boy, and all of that is in complete limbo right now,” Freed said.

Which is why Saturday was much more than just a party, in her eyes.

“I cannot believe how many people showed up to support Maxwell and Riley.  It made the day so special for us.  And it just meant the entire world for my family.”

Learn more on “Milestones for Maxwell” or donate to help the family fund research and a clinical trial.

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