BELDING, Mich. — Six-year-old Odin Stone does whatever it takes to support those around him.
“He wants everyone to feel apart of,” Rachel Zipsie, his grandmother who lives in Belding, told FOX 17 Thursday.
Zipsie says that caring spirit is especially true for his younger brother, Rhys.
“This morning, he heard Rhys in his room… he went in, unhooked him from his tube, unhooked him from his pulse ox machine, said, ‘Bring your stuffy,' and ‘Let's go wake up mom.’ And like, that's what he does. If he sees somebody needs help and he knows that he's capable of it, he’ll do it,” said Zipsie.
She explains in 2020, doctors diagnosed the three year old with a pair of genetic disorders that cause developmental delays.
“It’s so rare they tell us it's on Reece’s time and everything's on Reece’s time,” said Zipsie.
Appointments, surgeries and more soon became the family’s norm.
However, Zipsie began to worry about them too, so she created Odin’s Heart Foundation.
“There was a community that wasn't there and that was the community to help the people who were helping each other,” said Zipsie. “When you see rare disease families do so much for each other and you look around, you're like, where did they find the time? [So it’s like] let's ease that a little bit.”
It’s a nonprofit that serves the families and caregivers of patients with rare medical conditions through financial and community support.
Rare disease impact about one in ten people in the United States.
“It's that reminder that we see you and we know how hard it is,” said Zipsie. “When you think about it, if they're caregiving for somebody 24/7… it erodes their own health, their well being. We've learned that during that process, if we give them a little space and time to pause and time to relax… that can impact the rare disease child's life in a very positive way.”
Zipsie says they plan to give out monthly awards, send gift baskets and create resource guides.
Odin’s Heart Foundation helped their first family in November.
“We’ve got a lot of big ideas and big goals,” Zipsie said.
She notes the difficulty in an initiative like this, but says if Odin can offer support to those who need it most, she can too.
“If we don't tell people how important helpers are in our lives, then how are they going to know that maybe it's a good idea to help?” Zipsie asked.
If you would like to nominate someone for Odin’s Heart Foundation or donate, click here.
