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Date: 12/2/2020
CHICOPEE – The Demers family are lifelong residents of Chicopee who are reaching out to the community for help. Daniel and Valarie Demers created a GoFundMe page for their daughter Sophia to help with costs from her upcoming Fibrous Dysplasia surgery.
Sophia was diagnosed with Fibrous Dysplasia at the age of six. According to the Demers’ GoFundMe page, “Fibrous Dysplasia is a rare bone disease where normal bone and marrow is replaced with fibrous tissue, resulting in formation of bone that is weak and prone to expansion. As a result, most complications result from fracture, deformity, functional impairment and pain.”
In Sophia’s case, the Fibrous Dysplasia has affected bone throughout her skull. This is leading to a crowded optic nerve on her left eye which, if not operated on, will lead to blindness.
Sophia is now 9 years old and is set to have surgery on Jan. 4 at Boston Children’s Hospital.
“None of the doctors around here even knew what it was when she was diagnosed,” said Valarie Demers. “The first surgeon we talked to wanted absolutely nothing to do with it. He was too nervous to even touch it, he thought that just the heat from his tools alone could cause her to go blind instead of saving her vision. But we got a second opinion with another surgeon and she is very comfortable doing the surgery. She thinks that she can save her vision and she said if we do nothing then she’s gonna lose it anyway. So at this point we’re hoping for the best.”
The Demers donation goal is $10,000. Right now, they are more than halfway there. All donations from the GoFundMe will be used to help with surgery costs, travel and lodging expenses and also to support the family while Sophia recovers. The recovery time from this surgery is about a month, during which Valarie will be out of work to stay with her daughter. Those interested in donating are encouraged to visit https://www.gofundme.com/f/looking-for-help-with-my-daughter-sophia039s-surgery.
According to Valarie, they are hoping for the best from this surgery, but it isn’t necessarily an “end-all be-all.” The Fibrous Dysplasia could grow back down the road.
“For every single person it’s different,” she said.
Although the ultimate results are unknown, the Demers family is staying positive.
“It's a very complicated surgery, and has been a long road for all of us,” said Daniel Demers on their GoFundMe page. “Thank you in advance to anyone that can contribute to Sophia's care, or even just share the page to get the word out! We appreciate it!”