Like most families, the Marchettas in Williamsville have a lot going on.

While most of their day-to-day challenges are like anyone else's, some are very different.

That's because 8-year-old Jackson is living with a rare autoimmune disease called Juvenile Myositis, or JM.

"Three in a million kids are diagnosed each year which means it is very rare, which means it's rare if you even meet another family who's experienced the same thing," said Jackson's mother, Colleen Marchetta.

Jackson was diagnosed when he was 2 years old, and since then he's undergone some aggressive treatments. Colleen said he was on about 13 medications at one point.

"There's very few people that can understand what I'm dealing with as a mother caring for Jack, and what Jack's dealing with. Very few people that can relate to it," said Colleen.

But Colleen found comfort in an unlikely place: social media.

Through a private Facebook group, she's been able to connect with hundreds of JM parents and caregivers across the United States and in other parts of the world.

"The first time I really contacted other parents on the group was when I just didn't know who to go to," she told 2 on Your Side.

Colleen said through the group she learned of two different research studies and was able to get Jack in front of some of the best doctors in the country.

After six years of dealing with the disease, now she's the one offering up advice to other parents.

"The tables kind of turn, and you become the person that's helping other families," she said.

Jack's struggles with JM are not over, but he is doing much better.

Jack said, "Nurses and my mom and father, they kept me safe and away from germs. And here I am now, a healthy, strong boy."

He's also an avid sports fan and even an honorary member of Niagara University's hockey team.

"He's athletic," Colleen said. "I love that about him, because JM attacks your muscles, and it causes severe muscle weakness. Every time I see him score a goal in hockey, or score a goal in soccer, I cheer that much harder because I know what he's overcome to get to that."

Saturday is Global Rare Disease Day, and Colleen wants other caregivers to children with rare diseases to know they are not alone.

"Be kind, because you don't know what people are going through behind the scenes," she said. "You don't know what's going on in their lives, so just be kind to everyone.

"I've learned that because I know that someone can look completely normal and have so much going on in their lives that you would never guess."

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