BELDING, Mich. — Six-year-old Odin Stone does what he can to support those around him.

“He wants everyone to feel apart,” Rachel Zipsey, his grandmother, who lives in Belding, told FOX 17 Thursday.

Zipsey says that caring spirit is especially true of his younger brother, Rhys.

“He heard Rhys in his room this morning … he came in, disconnected him, disconnected him from the heart rate monitor, said, ‘Bring it stuffy’ and ‘Let’s wake up mom.’ And like, that’s what he does. If he sees that someone needs help and he knows he can help, he will do it,” Zipsey said.

She explains that in 2020, doctors diagnosed a three-year-old child with a pair of genetic disorders that cause developmental delays.

“We’re so rarely told it’s on Reese’s time, and everything is on Reese’s time,” Zipsey said.

Dates, surgeries, and more soon became the norm for the family.

However, Gypsy began to worry about them as well, so she created the Odin’s Heart Foundation.

“There was a community that didn’t exist, and it was a community that helped people who helped each other,” Zipsey said. “When you see families with rare diseases doing so much for each other, and you look around, you think, where did they find the time? [So it’s like] let’s make it a little easier.’

It is a non-profit organization that serves families and caregivers of patients with rare diseases through financial and community support.

The rare disease affects about one in ten people in the United States.

“It’s a reminder that we see you and we know how hard it is,” Zipsey said. “When you think about it, when they’re taking care of someone 24/7 … it eats away at their own health, their well-being. We’ve learned that during this process, if we give them a little space and time to pause and relax … it can make a very positive difference in the life of a child with a rare disease.”

Zipsie says they plan to give away monthly prizes, send out gift baskets and create resource guides.

The Heart of Odin Foundation helped their first family in November.

“We have a lot of big ideas and big goals,” Zipsey said.

She notes the difficulties in such an initiative, but says that if Odin can offer support to those who need it most, so can she.

“If we don’t tell people how important assistants are in our lives, how are they going to know that this might be a good idea?” asked Zipsy.

If you would like to nominate someone for the Heart of Odin Fund or make a donation, click here here.

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