Jovani Joseph Maggio (JJ) was a beautiful 4yr old boy diagnosed with a form of childhood cancer called Rhabdomyosarcoma (Rabdo-myo-sar-coma). He was diagnosed on November 13, 2013 (at age 3) when a large tumor was found in his right calf and spread to the lymph nodes in his groin categorizing him a Stage 4, leaving him with only a 20% survival rate. Rhabdomyosarcoma affects approx. 450 children per year and medical professionals say childhood cancer is rare but we have learned throughout our journey that this disease is not so rare at all.
Jovani was to undergo a 54-week treatment protocol that included 7 different chemotherapy drugs and 6 weeks of radiation therapy. We’ve had the unfortunate experience to watch JJ endure 34 weeks of sickening chemotherapy and 28 daily sessions of destructive radiation that have only left him malnourished, emotionally and physically distressed, and sadly, full of more tumors. Due to the side effects from radiation he was no longer able to walk, run, jump, ride his bike, or play with his twin brother and best buddy Luca. We nearly exhausted all methods to motivate him so he spended his last days lying in bed watching TV and playing with his Ipad.
Inevitably his cancer stopped responding to the treatments and according to our oncologists there wasn’t much hope for him. They offered us the option of yet another toxic chemo drug that would decrease his chance of survival to 2%, which we declined, and he went under pain management and palliative care.
After a grueling 12-month battle Jovani earned his angel wings and passed away in our arms on November 20th 2014. Throughout treatment he displayed a courage that is unfathomable, never complained and died fighting to his last breath. His fight was courageous and has made an impact all over the world via friends and social media. The term “Strong Like JJ” was born and thousands have displayed compassion by representing a Superman logo or JJstrong logo on social media, stickers and Tshirts. His story and journey is now used as an example to make a change and raise awareness that childhood cancer is Real and is effectively killing children and destroying families across the globe.
Childhood cancer does not get nearly enough recognition or exposure as it deserves. Children are lost to cancer in the United States more than any other disease-in fact, more than any other childhood diseases combined. Childhood cancer remains the leading cause of death by disease among children in the United States and is the second leading cause of death overall. How is this rare??? Only 1%, 1 penny of every dollar allocated by the American Cancer Society goes towards pediatric cancer research. And a low 4% of funding is allocated for research by the National Cancer Institute. We are attempting to change this. A push for funding of research for more effective, less toxic treatments so other children just like JJ can have better quality of life and one day, a higher chance than 20%.
Jovani’s story is only one example of what families are faced with. 8 children die each day in the United States from cancer and thousands of families struggle each year to save their children with limited recourses and therapies that fail. Parents are forced to stop working to care for their diseased children and are still responsible for covering all living expenses.
Fortunately, there is some financial support available by private compassionate foundations to help ease some of the burden. Most of these foundations were started by the parents of children who lost the battle against cancer and want to provide the help they had trouble receiving. It is foundations like these that understand what these families need. There are also some trusted organizations that are fighting hard and funding research to find a bona fide cure not just failed chemotherapy treatments.
Private donations account for the bulk of support made to these organizations.
Join the fight and be “Strong like JJ“