ROCK STAR ROSIE, PEDIATIRC BRAIN CANCER WARRIOR

For: The Colucci Girls--Jo, Bella & Rosie :)
Chicago, IL
Organizer: BTB Foundation
$8,700
of $60,000 goal
14% Complete
Raised by 110 donors

The Story

Rosie Colucci is an amazing 13-year-old. Not only has she been fighting an overwhelming amount of complex medical diagnoses for over a decade now, she has been fighting brain cancer and multiple inoperable brain tumors.  Rosie preservers even though she continues to be diagnosis with even more medical complications, in fact, she was just named one of America’s top 10 youth volunteers, receiving her latest award, the 2018 National Prudential Spirit of Community award.   

The remarkable thing about Rosie is the fact that in spite of her own personal challenges and daily pain, she manages to make a difference in the lives of others. Rosie has been giving back to other children who are critically and chronically ill since she was just 4 years old. Rosie doesn’t just fight for herself, but she stands up for all medically challenged kids. She let’s them know that they aren’t alone in their fight. It’s her goal to “Spread Sunshine, Joy and Hope one toy at a time” through Rosie’s Toy Box, her own organization were she organizes toy drives and collects new toys for hospitalized kids.  

She also aims high to raise awareness and funds for desperately underfunded pediatric cancer research, to support new clinical trials and less toxic treatment option; and she has been very successful in her endeavors; raising over $500,000 in her life thus far. Rosie has been recognized over and over again for her giving heart and her outstanding service to others. Honored with the 2014 American Red Cross Youth Good Samaritan Hero Award, 2015 Chicagoland’s Kid of the Year, 2016 Children's Miracle Network Hospitals Miracle Child,2017 President's Volunteer Service Award-GOLD level, and the Prudential 2018 Prudential Spirit of Community Award 2018--State Level, Culminating with the presentation of the this years national award.  

Rosie doesn’t do it alone; Bella, Rosie’s older sister, and her mother, JoAnne, are always right along side of her. These inspirational advocates of pediatric cancer research and Neurofibromatosis awareness touch countless hearts and give so much of themselves for the betterment of others. Rosie’s family volunteers for organizations like the Pediatric Brain Tumor Foundation-Ride for Kids, Lurie Children’s Hospital of Chicago, Children’s Miracle Network Hospital, DemonTHON, Chicago Dance Marathon and many more. In ten years, Rosie, Bella and their mother, JoAnne, have generated hundreds of thousands of dollars for charity and cancer research. This kid, this family is/are powerhouses!  Rosie’s smile is infectious, her personality warm and friendly and she has an unbelievable positive attitude. 

The journey hasn’t been easy for the family of three. Faced with countless job losses, a nasty divorce, court costs, bankruptcy, multiple moves, eviction, homelessness, mounting and continuous medical bills, hospital parking fees, gas expenses, the Colucci family struggles day to day, but somehow finds time to laugh and make lite of the everyday hardships, remembering that they still have each other.  

We are trying to help them gain some stability in their constant struggle to keep a roof over their heads and buy them a house if possible! To help them get back on their feet, two local organizations have launched a fundraiser for the “Colucci Girls”, and 100% of the monies collect will go to Rosie, Bella & Jo. Won’t you please consider a small donation to this family in need who has lived a life of service to others, who have helped so many despite their own mountain of trials.   

Return some of the hope and inspiration that Rosie has given YOU and so many others. If you can’t donate, please share Rosie's story with your family and friends, and keep the giving going. Thank you!  

Sponsored by Len Austrevich (773) 669-7545 (Jokes4Miles.com) and the BTB Foundation (btbfoundation.org).    


Fundraiser Updates

Posted on November 26, 2017

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Posted on November 26, 2017

On Nov. 20th, Rosie went to the Epilepsy Clinic at LCH. She is seeing a new doctor. Dr. Sosa, a Neurologist who's now working with the brain tumor clinic. We love her already!! Super sweet, a great listener and very smart. 😁


She wants Rosie to be watched/monitored 24/7 for a week in the as an inpatient in the epilepsy lab. Rosie will check-in on a Monday and go home on a Sat. but probably not until January (in 5 weeks) unless something changes between now and then and the episodes get worse. If they figure it out in less than a week, they will send her home earlier. I’m so happy she is doing this so we can better understand what’s happening with Rosie right now. The best part of our visit was going to see Beckett and his mom and dad!! WE LOVE YOU MR. B!!! ❤️💚💜💙💛 


Posted on November 2, 2017

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Posted on November 2, 2017

UPDATE ON ROSIE

Rosie had an MRI on Oct. 25th:

Rosie’s past MRI’s had a small spot on it, the area in question, pictured here, was smaller then a pencil eraser, the doctors had it on their radar, but not much attention was paid to it because it was so small. Now it is significantly larger and has well-defined borders ( thoughts are it’s another Glioma) however, the doctors are stumped by the appearance of it. If you notice, it’s black in the middle, meaning it looks like fluid, but it’s not something that they’ve ever really seen before. Fluid inside a cyst or tumor usually looks different, but this one “matches” the Cerebrospinal fluid (CSF), which is a mystery. They are not sure they want to biopsy it. The structure is such that they don’t believe it’s a cyst. They also don’t believe that it’s an infection. They also don’t think the symptoms that she’s having are related to the tumor. This tumor is in a new area of the brain. They think she might be having seizures. Which is now a priority over this new tumor. Brain tumor board meets on Tuesday and her case will be discussed in more depth and detail then. We do have an option for treatment, thank God, but we’re not going to start treatment until we figure out all the other things that are going on first. They’ve ordered an EEG of the brain, a sleep study and she needs to go back to ophthalmology, GI and Endocrine. So lots of tests ahead. I’m not sure when the next MRI will be yet, but it will help the doctors to fully understand how fast it’s growing, that will be decided Tuesday. Just thanking God that it’s is not an emergency situation where they feel the need to get Rosie on treatment immediately. 

Thank you for all the prayers, please keep praying.


Posted on August 18, 2017

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Posted on August 18, 2017

Update on Rosie & more…

I’ve gotten used to little sleep over the years. Awake most nights on and off, praying, thinking, worrying or trying not to worry. Giving it to God since he’s up anyway, praying some more, often wondering how we are going to make it. College expenses are ahead of us next year. And of course the medical bills are always a steady reminder that life with NF, a chronic illness, reoccurring cancer/tumors, and hydrocephalus will never end. I’m always thinking about the next possible shunt malfunction and pray it’s years away.

We saw ophthalmology this week and Rosie’s vision seemed for the most part stable. There are always small changes to her color vision, depth perception and field of vision, which is to be expected with the optic nerve atrophy. They ordered another test and took pictures of the optic nerves in her eyes again. Her vision is stable, but the deterioration is apparent; she no longer wears glasses because they cannot help her see better anymore. Since it’s not a lens thing, it can’t be corrected. Her optic nerve is slowly dying off, and once it’s gone, it’s not coming back. No dramatic changes are a positive right now.

She is scheduled for another vision test and exam in 8 weeks, unless something changes sooner. Right around the same time she will have another MRI and see Dr. Jason, her neuro-oncologist, and Dr. DiPatri, her neurosurgeon. He keeps tabs on her shunt. Fingers crossed this year will go a bit smoother than last.

Rosie had neuro-psych testing over the summer and the results were good and bad. She is struggling with depression, which I see daily and it makes me sad. So we are going to try going back to talk therapy for a while. She also needs to start to heal the feelings of abandonment she has from the absence of her father. Her appointments will be with a special neuro-psychologist again this time, like when she was little; it was such a huge help to her. Having a special psychotherapist who understands brain tumor kids and the affects of chemo on the brain over a long period of time is key.

She is also struggling with her ADHD (non-hyper type) and is unable to focus, which really affects her reading.  Her IQ is well above average, but she is still struggling to gain focus and understanding in many areas. She works way below her potential in a group or classroom setting, so she is going to go on a trial period of ADHD drugs to see if it might be helpful to her. They really want to get her ready for high school and figure this all out now instead of later. 

I always say God will provide, and He continues to show-up every time I turn around. Let go and let God!! So many Angels out there on this earth, feeling so blessed!! Thank you to everyone who has been praying for us, who has blessed us with unceasing prayer, a donation, a gift card, a helping hand. It’s not easy being Mom, Dad, Caregiver, only source of income and everything else.

Thank you to all those who have made generous donations on the YouCaring site; thank you to Jokes4Miles and The BTB Foundation for setting it up. It’s been such a huge blessing, you have no idea; it means the world to us to have your support.Thank you for helping to provide for a roof over our heads. Thank you for helping us so we can in turn continue to do what we do and serve others through education, awareness and philanthropy, funding a cure for all pediatric cancers.

Feeling so very blessed!!!
Thank you,
Jo 

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