Texoma family shares Osteogenesis Imperfecta story to raise awareness of rare disease

Local News

VERNON (KFDX/KJTL) — An estimated 25 to 50,000 people in the United States are living with Osteogenesis Imperfecta also known as Brittle Bone Disease.

One Texoma is family hoping to spread awareness about this rare disease on Wishbone Day.

Tiffany Villeda’s 22-month-old baby Mia Villeda was diagnosed with Osteogenesis Imperfecta a few weeks after being born.

“At first when we were first in the hospital it was really hard because we had a daughter at home and we were in Fort Worth and so we didn’t get to see each other a lot,” Tiffany Villeda said. “It’s getting easier.”

Now that Tiffany and her family are learning much more about OI they want the same for those around them, especially on Wishbone Day.

“A lot of people with Osteogenesis Imperfecta, some of them you can’t even tell that they have anything wrong,” Tiffany Villeda said.

“A lot of people say, ‘why don’t you drink milk, milk is gonna help your bones,’ that’s not what helps her bones,” Villeda said. “It’s in her collagen., she can drink milk all day long but it’s still not gonna help her bones be stronger.”

Villeda, since learning of her daughter’s disability, said her goals have been to ensure she lives a full life like other kids around her.

Mia’s grandmother, Terri Hanes agreed.

“I just don’t want people to treat her differently and think of her differently, we just have to be very careful with the things that she can and can’t do,” Hanes said. “You always think something like this could never happen to you, it’s always someone else, but it has happened, it has brought us together, it’s made us be a little more appreciative of life.”

So far, Tiffany and Hanes said Mia has been defeating the odds, doing things doctors initially said she wouldn’t be doing like sitting up, now they hope as they share the story of their little girl, Ttexomans will open their eyes and minds and make a difference by learning about this rare disease and spreading the word.

“I am thankful for everything she does and she has been a great blessing to all of us,” Hanes said.

There is an event Friday evening at 6:00 in Allingham Park in Vernon.

It is free to the public as they continue to spread the word during OI week.

Copyright 2021 Nexstar Media Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Don't Miss

July 23 2021 05:30 am

Trending Stories

Report It

Latest News

More Local News