Benefit to be held for Tonawanda girl battling Stone Man Syndrome

Mia Frears has been diagnosed with a debilitating disease known as Stone Man Syndrome. It is an extremely rare connective tissue disorder in which muscle, tendons, and ligaments are gradually replaced by bone, forming bone outside of the skeleton that restricts movement causing her to become a living stone.

Mia Frears of Tonawanda is a vibrant and energetic 4-year-old little girl who loves to color, sing, dance and play with kids in her neighborhood. Sadly, she has been diagnosed with a debilitating disease known as Stone Man Syndrome. It is an extremely rare connective tissue disorder in which muscle, tendons, and ligaments are gradually replaced by bone, forming bone outside of the skeleton that restricts movement causing her to become a living stone.

“Mia’s left shoulder is frozen…she can’t move it. But there has been no flareups since February,” said Dawn Wells, Mia’s grandma. “We all thought ‘No, it can’t be. They were wrong twice, so they have to be wrong again.’ Pretty devastating it still is. Mia’s mom is strong in front of people during the day, but she doesn’t do well after the kids are asleep.”

Mia’s condition is being followed by a medical professional who has dealt with this condition for more than 30 years. Her care is out-of-state, therefore her family is incurring out of pocket expenses not covered by the state. Mia lives in the City of Tonawanda with her mom and older brother, Domenic, who she loves more than anything.

“She and her brother are very close and they spend their time reading, coloring, playing video games, and going for walks together,” said Wells.

A benefit will be held for Mia 1 to 6 p.m. June 16 at Eldredge Bicycle Club, 17 Broad St., Tonawanda. There will be a basket raffle, food and refreshments. The family is asking for the community’s help in donating baskets, gift cards, or any items that could be used for the benefit.