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501(c)(3) non-profit organization founded in NY 2013
"Cavernous transformation of the portal vein is what the doctors call it…I call it a living nightmare. "
My name is Gary Lee Elwell Jr., and I was born January 20th 1990. My mom said that I was jaundice and I couldn’t come home with her, she told me that that was the worst day of her life, or though she thought at the time, she had no idea what my life was going to do to everybody later on as this story unfolds. As a newborn my mom would dutifully bring me to the pediatrician once a month for my check up to see how I was progressing. By all standards I was healthy and growing, but by the time I was around 11 months old the doctor told my mom that my liver and spleen still felt larger than they should be, and like a good doctor he had some blood drawn and off to the lab it went. A couple of days later my mom gets a phone call and the nurse says that my mom should make an appointment at Schneider’s children’s hospital at Long Island Jewish hospital in New Hyde Park. So my mom and my Aunt Dale took me to the hospital, my mom said that all the testing lasted from 8 in the morning until around 5 in the evening. The doctors told my mom to bring me to the hospital every three months for blood work so as to monitor my liver. So for the first 7 years I was monitored, this meant hospital visits every three months which consisted of blood work and examinations. I’m guessing by now people who read this probably think, “so what’s so bad about this condition.”
It’s March 2001 and I am 11 years old, my friend John and I went to the movies accompanied by his dad. I probably shouldn’t have gone to the movies that night because my stomach wasn’t feeling well. I was eating popcorn and I suddenly felt the urge to vomit. So I told my friend and his father that I was going to the bathroom. I felt woozy as I was walking. I made it to the door and with weak arms I pulled the door open to an empty movie theater hallway, I collapse to my knees, no one sees me, no one can help me. The first bucket of blood spews out of my mouth and on to the rug. I look in horror, and then I repeat this horror, I’m wincing, my stomach hurts, blood is dripping off my lips, I’m so scared and in my mind I am calling out for my mom. With weak knees I stand up and I make my way back to where my friend and father is, I tell them that I need to get home right away so that my mom can get me to the hospital, being that they knew about my condition they jumped into action and they helped me out the door, I am very dizzy at this point. It’s really weird how the mind slows things down and is played over and over in one’s mind. I remember them guiding me out of the dark movie theater and when they opened the door to the hallway, I can see two movie theater ushers on their hands and knees with a sponge and a bucket trying to clean up this massive amount of blood, and I can hear them say, “oh my gosh did someone get stabbed, should we call the police”. I was embarrassed, I was dizzy, I wanted to go home, and I wanted my mom.
My mom was at work, but my dad was home, and I rush into the bathroom and I can see the horror on my dad’s face as I start this nightmare again. I can hear my dad franticly on the phone with my mom who worked at the time at Mario’s Pizzeria in East Northport; which was a half hour away, we only had one car and she had it. It seemed like an eternity waiting for my mom. We get to the hospital about 12 midnight, my mom quickly explains my condition, but she has no idea what happened to me at the movie theater, she only knows what happened to me with what my dad saw in the bathroom, so at this point my blood loss is great.The doctors quickly formed around me and they started putting a tube in my nose to my stomach to help suck out any more blood in my stomach and this will help me not to asphyxiate on the blood. They hooked me up to one of my many units of blood that I will receive throughout my month long stay.
My condition is very rare, and the survival rate before age 11 is 30%, and I am 11. My condition is that there is a blockage in the portal vein; this vein carries oxygen rich blood to my liver and being that the liver and spleen work together, my spleen was extremely enlarged due to the fact that my liver is in a thrombosis state because of the lack of blood flow. With all this pressure it creates thick bloody veins in my esophagus and my GI. So while I was eating the popcorn; which is a very rough food; this ripped open many of my veins which made me start to bleed uncontrollably. Although I was probably bleeding before I got to the movies, the popcorn made matters worse.
Being that no food or liquid can enter my stomach the doctors sewed into my groin vein a tube where I can receive all my lipids and nutrients. I was in a coma for three days; I had just in the first week alone 12 blood transfusions. My doctor is great, his name is Jeremiah Levine, he is thee man at the pediatric gastroenterology department at Long Island Jewish in New Hyde Park, and he has kept me alive for 24 years now. Even though my story is not far from over, and I have had many bleeding episodes since then, I’ve learned to embrace it and use my story to help others. Whatever illness is going on in a child’s life, one can be sure that a parent has put everything on hold to be there and care for that child. My parents are poor, but hard workers, my dad works when he can find work, and my mom now works for Mario’s Pizzeria in Syosset, and she works long hours, and when I had to go to the hospital a few months back, she would work a few hours and then come and be with me, she would shower at the hospital and just go back and forth between hospital and work and I have also seen other parents do this too as well.
So my mom, my sister-in-law and I, formed Battle Hardened Foundation. One might think that this is such a strong and in your face title, but if one were to see just what kids and parents go through in an illness crisis, one will see how strong they become. We see them as battle hardened. Battle Hardened Foundation shows no age limit, what we mean by this is that adults can become sick as well as children and this can happen at any age. We help all ages of anyone who is struggling to make household payments while they are tending to their sick family member.
We can only help those in need though donations, one can donate via the internet; which is a safe and secure site, or one can mail in their donations to Battle Hardened Foundation, 16 Bailey dr. Massapequa, N.Y. 11758