Richmond mom raises awareness about site connecting kids with chronic illness

Published: Jan. 14, 2021 at 7:35 PM EST
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RICHMOND, Va. (WWBT) - We’ve all explored and even depended on the world of Zoom and online chats in 2020. But long before a pandemic pushed everyone to screens to interact, many children with chronic illnesses found their way to each other the same way, and the result was life-changing.

Motherhood is rarely “typical,” and it certainly took an unexpected turn for Richmond mother Sherrie Bruce, who raised an extraordinary child, in extraordinary circumstances.

“Eryn was born in 2001,” said Sherrie Bruce. “We didn’t know before she was born that anything was wrong but when she was born, immediately we knew that something wasn’t right.”

Eryn’s muscle cells never properly developed.

“Her brain was completely normal,” explained Bruce. “So she was just basically trapped in a body that didn’t work right.”

But Eryn never focused on what wasn’t right. She had friends at school, and like any kid, hopes and dreams in her heart.

“It would have been so easy for her to be stuck in an anger,” said Bruce. “A ‘why was I born this way’ sort of way, but she never was. She was always just so fun to be around.”

Still, Eryn faced challenges most kids don’t - being in and out of hospitals.

“She had 16 back surgeries over her life,” said Bruce. “So, from the time she was 7 to 16, her pain became too great so we had to pull her out of school in middle school and she finished up schooling online...So she was really more housebound a lot of the time, so she lost all of those friendships she had gained when she was in school.”

And that change was hard on Eryn.

“You desire and need those friendships, and she just wasn’t able to get to them through any traditional way,” said Bruce.

Then, through a hospital stay, Eryn found out about an organization called “Chronic Warriors.”

It’s a national organization that serves chronically ill children facing a variety of medical issues, but since it’s all online, Eryn could participate at home.

And her family will tell you, it changed the course of her life.

“You know, Eryn would tell us ‘Fushia said blah, blah, blah’ and she would get little gifts from them and she was like, ‘yeah, my Chronic friends,’” said Bruce.

Formal meetings are moderated by a licensed clinical social worker. But once these kids connected, they chatted outside of the group, as teens do.

“Eryn was trying to get a boyfriend so there was a little bit of help in there with that - that they would try to talk about but just typical teenage, young adult kind of stuff that they would talk about,” said Bruce.

And for a child, medically dependent on many skills, that normalcy felt great for the whole family.

“These were friendships that she made on her own, using her own personality, her own individualism, and friendships that lasted until the day she died,” said Bruce.

Eryn passed away in 2019, but her family continues to raise awareness about Chronic Warriors because they know how important the program is for so many kids - the independence it enables, and the relationships it builds for kids in extraordinary circumstances.

“That just gave me peace knowing that she was still happy and her life was still a life well-lived because she could have that independence. It wasn’t just a life about medicine and treatments and pain. It was a life of joy and fulfillment, and she got it specifically from this group.

If you think Chronic Warriors might be a good fit for your child, click here to learn more.

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