The Super Charley Fund - Charley Demaio
My name is Sandra Prisco, but I am entirely irrelevant in this story. This is the story of a brave and beautiful little girl named Charley. Charley is 3 years old and cute as a button. She has a big brother and sister that she adores and a smile that can melt you. Her mom and dad are Nicole and Steve Demaio. I have known Steve since high school and a sweeter soul you cannot find. While most of us spent January 2021 nursing hangovers, procrastinating on our New Year’s resolutions, and keeping our fingers crossed that the pandemic would soon subside, the Demaio family was dealing with the unimaginable. Their precocious, energetic, silly little girl was sick. Lethargic and vomiting, Charley and her mom shuffled between doctors offices and the Emergency Room with few answers and little comfort. In the meantime, Charley was losing her energy and her Mama was losing her patience. They headed back to the ER for the third time in as many weeks determined not to leave without answers.
Every parent has a fear, one who’s name they dare not speak, nestled somewhere deep in their soul. On January 22, Nicole and Steve had that fear materialize… Charlotte, their perfect little Charley, had a mass on her brain and her symptoms were from the pressure it was causing. After being airlifted to CHOP for emergency surgery to relieve the pressure, their fear had materialized and had a name: Anaplastic Ependimoma, a rare and aggressive form of brain cancer.
Charley has endured more than any person should, let alone a sweet bubbly toddler. She has already undergone 33 rounds of radiation and is in the midst of 4 consecutive rounds of debilitating chemo. Her parents have watched their baby endure pain, sadness, fatigue, and being away from her brother and sister. They have watched their baby lose her excitement to play, her energy, and her hair…. But never her smile and never her fight. No child deserves this. No parent deserves this. And while there are countless cases like Charley’s with a different cancer and a different child, we often look away. We look away not because we are heartless or we don’t care. We turn away because it’s too painful a reality to look at. We look away because it reminds us of how fragile our lives are, the lives of our babies. But for Nicole and Steve, looking away isn’t an option. This is their reality and they are fighting every day to help their Charley beat this beast, to be Mom and Dad to Frankie and Emma, to keep up their spirits so they can guide their family through this nightmare to the other side.
This is all more than anyone should have to take on, and yet there is a nightmare lurking just outside this one. As the Demaios carry this unimaginable emotional load on their backs, the healthcare system is adding on an immeasurable financial burden on top of it. When your baby is sick, the last thing that you should have to concern yourself with is how you will pay to make them better, but that is where things stand. Go Fund Me should not be necessary. But it is. I have known Steve since we were practically kids ourselves. Feeling completely useless to do anything to lighten their emotional burden, maybe we can help with the unfair financial burden they have to carry.
I am not beyond begging and am not beyond guilt. Donate. Please. Donate for Charley. Donate because we all fear this. Donate because we are all powerless in the face of this monster. Sacrifice that Starbucks tomorrow, rent a movie instead of going to the theater this weekend, skip that nice bottle of wine. Donate here instead. Charley is in the middle of an epic battle and she needs an army. Join the fight. We can’t help her beat Cancer, but we can help make it that the day she beats this thing is the end of this nightmare and not the beginning of a different one for the Demaio family.