NF HERO: ROSIE COLUCCI

"Rosie is an NF Hero. She’s a happy, strong, courageous little girl, an inspiration to so many. She warms the hearts of all those who know her with her never-ending smile and contagious laugh.

The first time we heard the word neurofibromatosis (or NF) was at Rosie’s six-month check-up. Her pediatrician mentioned it because of the number of café-au-lait spots she had (the spots look like a coffee stain on the skin—we thought they were just birth marks). When Rosie was 11 months old, we saw the NF specialists at Children’s Memorial Hospital (CMH) in Chicago where they told us that it was just a matter of time before Rosie would be diagnosed with NF. So when Rosie was officially diagnosed with NF1 on her third birthday we were not at all surprised. We were shocked however when just weeks later on September 7, 2007 she was diagnosed with an inoperable hypothalamic optic chiasm glioma (a rare brain tumor) and direct result of her NF1.

Immediately following her brain tumor diagnosis Rosie was admitted to CMH due to a life threatening condition called acquired obstructive hydrocephalus, she required immediate brain surgery. Due to complications with the hydrocephalus and the VP Shunt that was surgically placed in her brain to reroute brain fluid, she had to endure four more brain surgeries over several weeks. Rosie did not bounce back, time after time, she continued to have problems, and she grew weak and frail. Over the next four months we spent thirty or more nights at CMH by her bedside. Where was our vibrant little girl, our non-stop climber? She was not the same child after months of being in and out of the hospital. She had lost 17 pounds off her tiny frame and could barely walk; she had problems talking from the trauma to her brain. We were, to say the least, very, very worried.

Rosie also had one general surgery for a port insertion, like a central line, it is required for her weekly chemotherapy treatments and it allows easy access for blood draws and other IV drugs and fluids. She started chemo right away in Sept of 2007, while still in the hospital. After the first three months of chemo, a MRI revealed devastating news again, her tumor had tripled in size. Rosie’s Neuro-Oncologist started her on a different chemotherapy immediately. The endocrinology team discovered she had also developed excessive growth hormone levels due to the tumor’s location. The high growth hormone level was thought to be contributing to the tumor’s increase in size. Rosie started receiving an injection drug to antagonize or slow down her growth hormone levels. Without delay, Rosie started the injections every eight hours; she has received over 500 shots to date. Recently, in July of 2008, she began receiving a new medication, one that was just approved by the FDA for use in the US. It has given her some relief from the daily injections. She receives the new drug every 28 days. After just two rounds, it has proven to be difficult for Rosie; the drug causes her to have severe diarrhea and gastrointestinal problems.

Rosie, like 60-70% of NF kids, has many Unidentified Bright Objects or UBO’s, on her MRI’s. Normally, UBO’s do not take up mass space in the brain, but Rosie has a UBO taking up mass space at the back of her brain located near the basal ganglia, her doctors are watching it for any changes. The specialists cannot prove it’s a glioma at this time; it’s not causing any current issues and remains stable for now.

On top of everything else, Rosie’s newest complication is the diagnoses of another disorder call CPP or Central Precocious Puberty. This too is caused by the tumor’s location. Rosie requires another surgery to insert an implant (another new FDA approved drug within the last 12 months) to hold off the CPP for another eight or nine years. This will involve a surgery each year to remove the old implant and replace it with a new one. We are happy to share that her tumor has started to shrink!! She continues with chemo every week; we hope she will be done with treatment by Jan 2009.

Surprisingly, through all of this we feel very blessed. So many people have touched our lives: amazing, bighearted people. That is why for us, in this devastating time of uncertainty, there is hope and goodness in our lives. We have seen so much good come out of this unfortunate situation. We have been shown incredible amounts of kindness, caring, generosity and love. Family, friends, neighbors, our community, and strangers from across the US have reached out to us. People all over the world are praying for Rosie!

It does truly amaze us; it warms our hearts and souls and gives us the strength and hope to keep moving forward with our efforts to educate the public about Neurofibromatosis. Please help us in our quest to find a cure!!

The power we get from others, like you, fuels us—please help Rosie and other kids like her who live with the effects of NF everyday…

PLEASE, HELP FUEL THE CURE!!

To learn more about Rosie, please visit www.ResearchforRosie.com or visit her care page at www.carepages.com and visit, “Rosiespage”.

Thank you for your prayers & continued support!"

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