Rock Star Rosie, Cancer Warrior

For: Colucci Family
Chicago, IL
Organizer: BTB Foundation
$8,045
of $375,000 goal.
Raised by 103 donors
2% Complete

The Story

Rosie Colucci is a 13 years-old battling Neurofibromatosis (NF1), multiple brain tumors and Acquired Obstructive Hydrocephalus since she was just 10 months old. However, Rosie doesn't let that get her down; when she isn't in treatments, she’s holding fundraisers, raising money to help find a cure and to assist other kids battling similar diseases. 


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, 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. Rosie has received several awards for her philanthropy, including the Children's Miracle Network Hospitals Miracle Child 2016, Kid of the Year 2015, Red Cross Good Youth Samaritan 2014 and top overall fundraiser 2008-2014 for Chicago Dance Marathon. This kid is a powerhouse, and her positive attitude is unbelievable.


The journey hasn’t been easy. Faced with job loss, divorce, bankruptcy, homelessness, and medical bills, the Colucci family has no income yet mounting expenses. To help them get back on their feet, two local organizations have launched a fundraiser for THEM. Please consider a small donation for this family in need. Return some of the hope and inspiration that Rosie gives to others. If you cannot donate, please share Rosie's story with your family and friends!


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

Fundraiser Updates

Posted on November 26, 2017

UpdateImage

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

UpdateImage

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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