CURING KIDS CANCER MARATHON II 6/07/2014

The DHAAST. Bernadette Organization is a not-for-profit 501(c)3 organization which primarily focuses on the organization of sports programs for our community.  Our civic purpose is to foster community service amongst the youth in our area.  With our greatest efforts, we also try to strengthen and ultimately empower our children's sense of civic engagement and nationalism as they progress through adolescence.  In order to promote these qualities in our children, the Knights Organization continues to sponsor community events during each sports season to raise money and goods for various causes. 

From 2[phone redacted], through several different fund raising events (and your generosity), the Knights have successfully raised money to contribute to many wonderful causes in our community. These funds were donated to our military heroes through the Children of Fallen Soldiers Relief Fund and Breast Cancer Research through the American Cancer Society .  In 2013, we held our first Curing kids cancer marathon which benefited the Olivia Boccuzzi Foundation.  The marathon raised $ 47,000.00  that was put towards pediatric brain cancer research. 

This year will be no different as we will strive to again raise money for the Olivia Boccuzzi Foundation.   Our marathon will be held on Saturday June 7th , on 12th Avenue, starting from 9:00 a.m. and ending at 11:30 a.m.  It will mark our eighth annual kid's marathon. 

Here is story and mission behind the Olivia Boccuzzi Foundation

Olivia Marie Boccuzzi was born on the 17th of October 2009. She was the younger sister to our son James who was nearly 2 at that time. Olivia was just perfect. Frank, James and I could not have been happier. From the moment Olivia was born, we knew she was destined for great things. She amazed us with how independent and smart she was at such a young age. Olivia met all her milestones early. She walked at 10 months, spoke in sentences by 12 months, ran by 13 months, sang songs and climbed stairs at 14 months and so on. Olivia had a great passion for life. She was determined to squeeze as much laughter and adventure into each day. She loved to dance, paint, do puzzles, read books, make a mess, explore and run free. She loved her stuffed animals and her baby dolls, which she referred to as "friends". She loved her big brother James and they played and laughed and loved. She loved her dada and adored her mama. Olivia completed our family. We spent her first 23 months of life in total happiness. Each and every day was filled with fun and no real worries. Olivia was a very healthy child. We had no reason to suspect that anything was wrong. She never had a cold, never fell and passed her well visits with the pediatrician with flying colors. We were so thankful for this beautiful girl who constantly made us laugh and love. What an amazing kid! Every single day with Olivia was a blessing.

On September 21, 2011 life as we knew it ended. That morning, Frank and I noticed that Olivia was falling a bit at home and was somewhat clumsy. This was completely out of character for her since she really never fell. She walked so early and was very steady on her feet. We assumed that the falling must be associated with her age. She was only 23 months and kids fall right? Who thinks the absolute worst in this situation? Within a few hours, we noticed the right side of Olivia's face was droopy and her right arm and leg seemed weaker. Suddenly I noticed that her left eye turned in. It turned in and went back to midline. I ran to the pediatric ER at Maimonides Medical Center beside myself with worry that something awful was happening to my baby. They took blood, ran tests, and took scans. I assumed it was virus attacking her body and causing these symptoms. We needed to figure out what it is and give her the right antibiotics I thought. But what happened shortly therefore was something no parent could ever prepare themselves for. News that crushes you and takes your ability to stand upright and breathe. A CT scan of her head revealed a mass. We were told that our beautiful, amazing, smart little girl had a brain tumor. What? What are you saying? She is so healthy. Are you sure? There must be a mistake, we thought.

We transferred Olivia to NYU Medical Center that same day. An MRI was done which confirmed that she had a tumor in the pons of her brainstem. The brainstem is the center of the brain and all vital structures for survival are there. We were told that these tumors are usually highly aggressive and the prognosis was grim. We were advised that Olivia needed to start radiation therapy immediately. This was really happening. Saying that we were beside ourselves is an understatement. James just started Pre-k and Olivia and I just started a moms and tots program for 2 year olds. Life as we knew it in the Boccuzzi household would never be the same. We cried, and cried and cried some more. Literally overnight, our world was destroyed. In an instant, my sweet little girls' life was going to drastically change.

Olivia was diagnosed with a PNET (Primitive Neuroectodermal Tumor) of the brainstem. She was given a 20-30% chance of survival with much treatment. We never gave up hope. We were determined to do anything, and everything to cure her. I believed with every ounce of my soul that Olivia was going to be cured. She was going to defy the odds. From the moment of this diagnosis, I frantically researched, sent scans, and consulted with Neuro-Oncologists from the world's leading pediatric hospitals to seek out the "best" treatment.

Olivia's treatment consisted of 30 sessions of radiation therapy, which required daily sedation since she was so young. She underwent 3 brain surgeries including a 9-hour sub-occipital craniotomy and 1 spinal cord surgery. Olivia received 5 cycles of aggressive chemotherapy, which made her lose her beautiful hair, made her nauseous and vomit, and made her neutropenic and require blood transfusions. Along with this came a constant stream of blood draws, shots, MRI's, spinal taps, clinic visits, too many hospitalizations, physical therapy and so many other grueling medical procedures. Despite it all, somehow, Olivia was so amazing. She was so very courageous. She laughed. She played. She rarely complained. She still loved reading books, dancing, exploring and being with her family.



Despite surgery, after surgery, and trying different combinations of chemotherapy, the tumor was relentless. On August 17th, we were told the tumor was progressing and we had no other real options in regards to treatment. We started yet another experimental chemotherapy with the hopes that the tumor would respond and stop growing. But Olivia was getting weaker and the chemo was not working. We knew our baby was really sick but we never stopped praying for a miracle. Despite every effort to save our daughter's life, Olivia earned her angel wings on August 20th after an 11month battle. Our hearts will always carry the pain of losing our precious beautiful baby girl. Our souls long for the day when we will be reunited with her in heaven. Until then, Olivia will forever live in our hearts and minds as the most beautiful little girl to ever touch this earth.

As our family has learned, Childhood Cancer does not discriminate. It is the number one disease killer of children in the world. Olivia fought this horrible, cruel disease with everything she had and lived her entire life full of courage, laughter and much love. As her mama, I made her many promises. I told her I would make the boo-boo go away. I told her to keep fighting and mama was going to make it all better. Unfortunately, despite my hardest attempts, I did not succeed. But I will not stop fighting for her until survival rates improve, better treatments options are available and one day, a cure is found. We, as a family, are determined to carry on her name and press on for other children facing this gruesome disease and help find a cure for brain tumors.  We hope to be in a position to actual hire our first researcher in 2014.  We thank you for your love and support.  We are also looking for sponsors to donate to this cause and help us reach our goal. 
Please consider making a tax deductible donation today.

Enza Boccuzzi


If you are interested in running for such a great cause, please register online at www.knightsaa.org.   If you have any questions, please call me at [phone redacted].

Thank you.
Sincerely Yours,
Peter J. McCarthy
President - Dyker Heights Athletic Association
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Organizer

Peter McCarthy 
Organizer
Brooklyn, NY
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