CHICOPEE, Mass. (WWLP) – It is only through surgery that an 11-year-old girl with a rare disease will be able to see clearly again.

Sophia Demers from Chicopee has suffered from Fibrous Dysplasia since the age of four. Fibrous Dysplasia is a chronic disorder where scar-like tissue grows in replacement of normal bone that is common in children between the ages of three and fifteen, according to Johns Hopkins Medicine.

Sophia has been visiting doctors to monitor the growth of the scar-like tissue. When Sophia was nine her first major surgery had to be done due to moments of her blacking out.

Now, only two years after her first surgery, she will be heading into another one. Since the scar-like tissue has grown around the nerve of the eye and there isn’t a lot of space in there.

This has begun again after her vision began to see objects as darker and dimmer when she woke up in the morning. Sophia hasn’t developed too much major pain as of now, besides minor headaches. The disease is also in other parts like her sinuses and temple area. Her family has been shocked that it is rapidly spreading.

Sophia’s father, Daniel Demers says, “it’s affecting her vision and ultimately we don’t want her to lose any more vision or to go blind.” A craniotomy is needed to remove part of the skull.

Her family is ready to help Sophia get through her next major surgery. “We’ve already been through a really tough surgery and we know what to expect, but we are all kind of learning together as we go.”

This battle with the disease hasn’t been easy on Sophia and the family. “It’s been difficult. The last time she was in surgery it was about five to six hours and it was so hard sitting there, hoping that everything was going to go so fine. It’s a tricky procedure they are going to do,” said Sophia’s father.

“We have to be so proactive about it because the nerve is so sensitive that if you start to get any vision loss there’s no getting it back. That’s why it’s so imperative we stand on top of it because any changes could become permanent,” he added.

As Sophia fights through each day, she doesn’t let this hold her back from doing what she loves, such as dancing, softball, and making videos on TikTok. Her Bellamy Middle School peers, the community, and her family have been a huge support system. 

“I just want to make sure I can do what I need to for her. I just want to keep fighting for Sophia.”

Sophia’s father, Daniel Demers

In the fight against this disease, Sophia’s story has become a staple for other young girls her age. If interested in helping out Sophia raise money for her surgery you can donate here. January 9th Sophia will be going in for surgery.