Rosie Colucci was 6 months old when her pediatrician told her
mom the café au lait spots she had on her body could be
neurofibromatosis, a genetic disorder that causes tumors to grow on
nerves throughout the body.
By the time Rosie was 3, the NF diagnosis was definite. So was
the inoperable tumor in her brain.
Since then the Palatine second-grader, who dreams of growing up
to be a rock star, has undergone hundreds of medical treatments,
including chemotherapy, 13 surgeries and too many
middle-of-the-night trips to the emergency room.
Through it all, 7-year-old Rosie finds joy in every day.
"It's not that hard," Rosie says matter-of-factly. "You get used
to going to the hospital all the time. … I don't cry when I get
accessed. Every night I get poked. But when I go to the hospital
it's 'Hi Rosie! Hi Rosie!'"
Her family draws strength from Rosie's strength.
"She has an incredible attitude. She'll say 'Mom, isn't it a
beautiful day? Look at the sun'," says her mom, JoAnne Colucci.
"For somebody who is 7 years old, it amazes me that she will stop
and look at a flower or a dog and see the beauty in it."
Rosie has also worked to create that joy for others.
Rosie's Toy Box, her pet project, collects thousands of toys for
patients at Children's Memorial Hospital.
She started the project by giving away her toys to other
children in the hospital when she was 4, after noticing how many
toys she had during a hospitalization compared to other kids who
had none. Now she collects thousands of new toys every year for
kids, like her, for whom the hospital has become a second home.
When she's not holding fundraisers and toy drives, Rosie's busy
handing out her business card-her mom had 5,000 made-to anyone she
meets in stores and restaurants. She also participates in other
fundraisers-raising $3,000 in one day for one organization.
"She's raised tons of money with the help of so many. She does
the Pediatric Brain Tumor Foundation's Ride for Kids and she also
does stuff for the Children's Tumor Foundation, the NF clinic at
Children's and also the brain tumor area," says JoAnne.
Perhaps the biggest motivation for Rosie's fundraising efforts
is that she knows firsthand what it's like to be one of those sick
kids. The necklaces she wears wrapped around her neck are a
Rosie has 12 necklaces filled with hundreds of colorful beads,
each one an indication of a medical procedure she has undergone at
Children's Memorial. When asked about them, Rosie holds up the
strands of beads tucked underneath her wispy brown hair.
"These are my beads and these tell the story of my journey. All
the yellow ones are nights in the hospital; all these white beads
are chemos and I've had 142 doses of chemo. I've lost my hair
twice," she recites in her sing-song, little girl voice. "And this
bead here, the big one, that's worth a thousand shots. I have 13
stars and those mean surgeries, and lots of other beads."
Since age 3, Rosie has been fighting a myriad of complications
that are a result of the brain tumor. The tumor pushes on her
pituitary gland and hypothalamus, while also blocking spinal fluid
from getting to her brain. Instead of shrinking the tumor, the
initial chemo caused the mass to triple in size. Early on, Rosie
had emergency surgeries to relieve pressure on her brain, while her
dad, Mark, traveled back and forth from the hospital to care for
their older daughter Bella, now 11.
As the treatments took their toll on her little body, 3-year-old
Rosie would often ask if she was going to die. "I'm going to heaven
tonight, Mom. I'm just gonna go visit my friends for a little bit
and come back," she would tell her mom.
But one night JoAnne remembers being shaken to the core when
Rosie told her, "Mom, I'm going to heaven tonight and I'm not
But Rosie has hung in there-through chemo, surgeries and
innumerable trips to the hospital and doctor's office. She lost
half her body weight and weighed only 24 pounds at age 3. Then she
developed pituitary gigantism and started growing at a rate of 11
inches a year.
Five months ago, the doctors stopped Rosie's third attempt at
chemotherapy because it elevated her already high blood pressure to
dangerous levels. She takes dozens of medications every day to keep
symptoms at bay and sees 15 different specialists to deal with the
many health issues associated with neurofibromatosis and brain
Her family knows Rosie faces an uphill battle and they consider
each day with Rosie a gift.
"We never know how long Rosie will be with us," JoAnne says.
"She taught us to live the day the best you can. …She has this
incredible spirit that you can't help but see."
Each year on Rosie's birthday, her family throws a big party to
celebrate another year of life. This year, JoAnne realized that
with the mounting medical expenses-more than $2 million so far,
resulting in tens of thousands in deductibles and monthly
medications-they just couldn't afford to give Rosie a party.
When fellow parishioners at Holy Family Parish in Inverness
heard about the family's hardships, they decided to throw Rosie's
party. Not only that, but they have created a fundraiser party to
help raise money for the family.
On Oct. 1, the Rock Star Rosie Benefit will be held at the
parish. For the first time, instead of Rosie raising funds for
others, others will be helping Rosie.
Rosie's excited about the party. She loves to have her face
painted and, as her mom will attest, she loves to talk and meet
people. Plus there's always her rap to perform, one she wrote
"I dream of being a rock star, and driving my own cool car,"
Rosie raps. "But I just want to be a chemo nurse, I don't think I
could do much worse. Helping kids is what I do. I think you should
help them too."
If you're looking for Rosie at the benefit, she'll be the one in
the middle of the dance floor, bustin' a move with a glittery pink
hat and 12 strands of beads of courage wrapped around her neck,
dreaming of being a rock star.
Liz DeCarlo is senior editor at Chicago Parent. She is the mom
Liz DeCarlo is the senior editor at Chicago Parent.
See more of Liz's stories here.
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