Teen with inoperable brain tumor shares tens of thousands of gifts with other ill children

Reporting from Chicago —  Rosie Colucci’s medical history is filled with a series of staggering numbers.

Three rare and life-threatening diseases — an inoperable brain tumor, neurofibromatosis and hydrocephalus — fought with countless medications, including six types of chemotherapy.

Her mother estimates Rosie’s had 14 brain surgeries, mainly to implant catheters to keep fluid from gathering on her brain, a result of the hydrocephalus; 16 other surgeries and 230 tests; 405 clinic visits; 1,486 doses of chemo; 71 nights in the hospital; 33 emergency room visits; and 11 stays in the intensive care unit.

She’s endured a total of 2,310 pokes — including her shots, IVs and blood draws, according to her mother, JoAnne Colucci.

Another number: Rosie’s age — 14. An official cancer diagnosis came on her third birthday. After more than a decade of being sick, the teenager would much rather focus on some different numbers.

Take 60,000 — that’s how many new toys, games and blankets she’s helped get into the hands of hospitalized kids. She’s also raised hundreds of thousands of dollars for pediatric cancer research. Rosie ramps up her toy giveaways around the holidays but gives them out year-round.

“I know what it’s like to be sick and feel trapped in a scary hospital bed. It’s no fun being in pain, missing school, not being able to ride my bike, and just being a normal kid. It gets lonely, and it can get boring,” she said in a recent phone interview. “I wanted to bring joy to other kids in the hospital, give them a little hope, cheer them up and make them feel better.”

It didn’t sit well with her as a toddler learning to share that so many people gave her stuffed animals and toys, while other kids hospitalized with equally serious diseases weren’t seeing the same influx. Now she has been fighting that inequality almost as long as she’s been fighting the inoperable tumor that rests in the center of her brain. In that time, nearly 20 friends she met through children’s hospitals have died.

Rosie works tirelessly on Rosie’s Toy Box, a charitable organization she came up with, which now is on the path toward becoming a registered nonprofit. What started as a plastic bin on the front porch of the family’s Palatine home when Rosie was just 4 most recently was one of the fundraisers featured at an annual pub crawl, drawing hundreds of donated toys for hospitalized kids.

After toys are donated, Rosie works to get them into the hands of other children, bringing them to places such as Advocate Children’s Hospital in Park Ridge, another Chicago suburb. She has raised money through lemonade sales and bake sales, by participating in runs and walks for cancer research and by shaving her head for the St. Baldrick’s Foundation.

Her efforts haven’t gone unnoticed. This year, she was named a top Illinois youth volunteer by the Prudential Spirit of Community Awards. She has been the top fundraiser at the Chicago Dance Marathon, benefiting Lurie Children’s Hospital of Chicago, for six years in a row.

Kayla Roe, one of her best friends and a co-founder of the charity Sisters Giving Hope, won the Prudential Spirit of Community Award last year, said Kayla’s mother, Dana Roe.

“The two of them together really epitomize the giving spirit of the younger generation,” Dana Roe said. Both girls manage their busy schedules while maintaining straight A’s in their classes.

Another longtime friend of Rosie’s, Sarah Reichl, was about to celebrate her sixth birthday in October 2009 when her mom, Cathy Reichl, heard about what Rosie was doing.

“That was the first year, I think, we had a party where all her classmates from school were invited over,” Cathy Reichl said. “We told her guests they didn’t need to bring a gift, but if they wanted to bring one, we would donate it to Rosie’s Toy Box.”

Not long after that, Rosie and Sarah Reichl, now 14 and 15 and both freshmen at Fremd High School in Palatine, became close friends. The pair still work in the Colucci basement sorting donated toys by age group, but they also go to movies and do ceramics together.

“I wanted to de-emphasize the expecting of gifts and asking for gifts, and I just wanted to give her a sense of giving rather than always receiving,” Cathy Reichl said. “I hope it’s something that stays with her as she grows, and I think it will be — the realization that not everyone has what you have, some people have struggles with their health and could just use something to brighten their day.”

Rosenberg-Douglas writes for the Chicago Tribune