One year later, Indiana County couple with son battling rare disorder continues the fight - "He's a happy little guy."
INDIANA, Pa. (KDKA) - It's been about a year since we told you about Zander Marshall, the little boy from Indiana County fighting Leigh Syndrome - a rare disorder that affects the nervous system.
We've got an update from the family on how he's doing.
We're told Zander has been described as energetic, happy, and even a bit bossy. It's something his mom, Jenna Marshall, has no problem with because she was told Zander wouldn't make it to his third birthday, but here he is, three and lively.
"He's a happy little guy, he smiles all day long," said Jenna Marshall.
And while his spirits haven't changed, his movement has. When we first interviewed the Marshalls last Fall, Zander could walk about five or six steps before falling. Now, he only makes it two or three steps.
"He still wants to hold objects; hold our hands," said Jenna Marshall.
"Feels a little more unsteady, which is why, as Jenna said, we're really pushing him to continue those therapies to keep that functionality there," said Patrick Marshall, Zander's dad.
WATCH: KDKA-TV Morning News Speaks With the Marshall Family
For about a year now, the focus has been on raising awareness and money for the Cure Mito Foundation.
The goal is three million dollars to get a clinical trial in the works. The Marshalls want Zander to be a part of that trial because, they say, if he is he could be cured of this disease.
So, with their unwavering determination, they, along with other families across the country who have this disease are halfway to their goal--raising one and a half million dollars.
"There are still more people that need to hear about it. There are still people that need to know about it."
Locally, the community has raised more than $350,000.
"Looking at the big picture, it's not a lot of money for something that could literally fix these kids," said Jenna Marshall. "And ultimately, these donations, they're critical, they're helpful."
The Marshall family will be holding a Hope for Zander golf outing event on Saturday, September 21st at 12 p.m. at Meadow Lane Golf Course in Indiana, Pa.
If you would like to donate to the Cure Mito Foundation to support Zander head to this link.