Rosie's Story

“One person can make a difference in this world, and I’ve learned that it can be me!” said Rosie at age nine.

Rosie celebrated her 13th birthday on August 2, 2017. Her mother wasn’t sure she would ever see 13, because at several points during her lifelong journey with Neurofibromatosis (NF1), multiple brain tumors, brain cancer and a second life threatening condition called Acquired Obstructive Hydrocephalus, she's experienced several close calls with death.

“I made it to 13!!!” she cheered joyously on her birthday this year, “Woo, hoo!!”

Rosie has been making a difference in the lives of children who face medical challenges since the age of 4, when she started her own organization called Rosie’s Toy Box. The organization sprouted out of her own generosity when she was in the hospital. Rosie received so many toys, gifts, balloons and cards that she wanted to share some of her them with the children around her who hadn’t received any.

Over the last nine years, Rosie has touched thousands lives by providing hospitalized children with new toys, books, crafts and games, keeping them busy during long hospital stays. Throughout over 65 toy drives, Rosie has collected mountains of items. Her fundraising efforts have totaled hundreds of thousands of dollars in the past decade. Her philanthropy efforts help fund much needed pediatric cancer and NF research, new clinical trails and, hopefully one day, a cure.

Rosie knows all too well that research is expensive, and she knows she can’t fund it alone; that's why she puts so much effort into inspiring others to give. “I give people the chance to give, I bug them, remind them, ask them, plead with them to help me and people do!” Rosie says, wise beyond her years.

The generosity of others is what keeps Rosie motivated to continue, along with her friends in the hospital who are fighting for their lives. She has lost 17 close friends over the last 10 years, as well as countless long distance pals, having to read the posts from heartbroken parents on Facebook. It never gets easier.

Since Rosie’s medical journey began in 2007, her mission to Fund-a-Cure is a non-stop effort. Pediatric cancer research receives only four percent of national cancer research funds, which means that kids like Rosie have to make up the difference in other ways. She desperately wants to see a cure for the deadliest form of childhood cancer: pediatric brain tumors.

“It’s just not fair,” says Rosie. “Kids shouldn’t have to live like this!”

The Journey

At the early age of 10-months-old, Rosie started going to Lurie Children’s Hospital (formerly Children’s Memorial Hospital) due to a genetic disorder called Neurofibromatosis or NF. It causes tumors to grow on nerves throughout the body, and Rosie developed multiple inoperable brain tumors due to NF.

For years, the main tumor located in the center of her brain has caused many unusually complex disorders and conditions, making Rosie’s case one of the first of its kind. Rosie’s tumor cells have been involved in a handful of studies to help scientists and doctors learn more about her tumor type and NF.

Rosie also faces hydrocephalus, causing a buildup of fluid on her brain which needs an internal drain called a shunt to remove the fluid. This drain, like all drains, gets clogged from time to time and requires replacement. This is not a predictable occurrence. Each time she has a shunt malfunction it’s a very scary and excruciatingly painful experience, requiring brain surgery to fix. She has endured 12 brain surgeries so far. Pituitary Gigantism is yet another condition Rosie has faced since the age of three, leading to six years of painful growth hormone suppressant injections. Rosie went into puberty at the age of three; this condition is called Central Precocious Puberty. An implant was surgically placed in her upper arm each year for 7 years to hold off puberty until she was of the proper age. Bilateral Optic Nerve Gliomas (2 other inoperable brain tumors) have caused irreparable nerve atrophy that will eventually lead to blindness. Rosie has been learning braille and how to use a cane in preparation for losing her sight. These conditions have caused many other agonizing complications in her body such as extremely high blood pressure, left ventricular hypertrophy, hypothalamic obesity and more. With age, Rosie seems to be growing out of many of her complications, but not the threat to her life. In January of 2017, Rosie said “This has been the best quality of life I have ever had…I’m not ready to go back on chemo just yet!”

A member of The Beads of Courage program, Rosie’s story as a cancer patient is told through over 5,000 colorful beads, each symbolizing a moment in her journey as a cancer patient. The 2,310 black beads represent needle pokes ranging from IV starts to blood draws to shots and painful injections spanning over nine years. The 1,486 white beads represent doses of chemotherapy, of which Rosie has received 142 doses of highly toxic “chemo cocktails” given as an IV infusion through a port in her chest. Often times one dose is made up of multiple chemotherapy drugs, or in the case of oral chemo, a handful of pills multiple times a day. The 26 star beads symbolize surgeries that she has endured, and the ten birthday beads illustrate each of the birthdays she has celebrated since beginning her medical journey. The 388 blue beads signify the number of clinic visits she has had to wait patiently for to see any one of her dozens of doctors. The 230 light green beads represent MRI’s, ECHO’s, EKG’s, Ultrasounds and X-rays. The 186 rainbow beads are therapy beads from speech, occupational and physical therapy, and talk and play therapy. There are 33 Magenta “ER” beads, 2 hair loss beads, 71 yellow beads for nights in the hospital, and 10 beads for PICU or Pediatric Intensive Care Unit admissions. The special light blue hand bead signifies her place in the Lurie Children’s family. One-by-one they string together her experience as a childhood cancer patient and courageous warrior. Today, she continues to earn more beads.

“I think the Beads of Courage program is incredibly awesome!” says Rosie. “I love showing off my beads - they make me feel proud, and I feel inspired when I share them.”

Inspiration

Being a pre-teen is hard enough without having to worry about vision problems, balance issues and a brain shunt. But Rosie has embraced her challenges and used them as motivation to help others.

Having dedicated her days to being an advocate for kids going through devastating medical issues, Rosie has proved to be an unstoppable role model in the pediatric cancer community.

The Colucci Girls continue to raise money and awareness for pediatric cancer while moving through their own medical and financial troubles. Even in the midst of their toughest personal battles, this trio can be found calling others to action and helping to find a cure for childhood cancer. Their “this too shall pass” attitude serves as an inspiration to all.