12-year-old volunteer ‘rockstar’ with rare disorder now needs your help

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PALATINE, Ill. — Twelve-year-old Rosie has been battling Neurofibromatosis, or NF, since she was a toddler.

“Neurofibromatosis is a disorder that attacks the body with tumors,” said Rosie’s mom JoAnne Colucci. “Anywhere you have a nerve in your body, you can get a tumor.”

Just five weeks after her initial diagnosis, she was told she had an inoperable brain tumor. That was the first of many.

Almost 13 years later, she been on six different types of chemotherapy with multiple inoperable brain tumors and countless other ailments all related to NF.

She’s had 2,292 needle pokes, and 12 brain surgeries.

Through all of this she has maintained an unbelievably optimistic attitude earning her nickname, RockStar Rosie.

“I am strong, brave and courageous,” Rosie said. That mantra is also on the back of her shirt, reminding her to go with the flow and live in the moment.

When she’s not battling her own illness, she is out raising money to help other people in her condition. Rosie even started a campaign at her local hospital called Rosie’s Toy Box.

“People would bring us all this stuff like games and stories and my mom said, ‘what are we gonna do with all this?’ and I said, ‘I don’t know, what if I tried to give it back to some of the other kids who aren’t getting anything?'” Rosie said.

That’s exactly what she has done. Rosie uses “Rosie’s Toy-box” as well as other fundraisers, big and small, to help others.

This is a family going through so much, but still dedicates their lives to helping other people who are going through the same thing. Now, they need help of their own.

“It destroys not just you emotionally and physically,…financially, it wreaks havoc on everything,” Colucci said.

Due to increasing medical costs, the family has lost their home, and they are struggling to pay rent.

“It’s hard to find a house, we can’t always find one.” Rosie said. “It would just be awesome if we never had to move again.”

To donate to the Colucci family, go to rockstarrosie.com

To learn more about Rosie, check out her Facebook page here.

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