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Ethann_Evan

Photo Caption: Noah, age 16, and Evan, 6, severe hemophilia, laying on the couch

My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a 鈥榥ormal鈥 life. I remember crying to my mom and saying 鈥淗ow could this happen?” Every time I made a wish in a fountain, I wished that my little brother could be healthy. That鈥檚 all I wished for. Why couldn鈥檛 my wish come true?

When Evan was about one-and-a-half years old, he had a head bleed and was sent home with a PICC line for my mom to give him factor until he was able to get a port. He was admitted to the hospital a couple of weeks later because he had a fever. During his second day hospitalized my dad and I went to spend the day with him and my mom.

Noah and Evann

Photo Caption: Noah, age 7, Evan, age 1, playing

Evan was playing in the toy room. I was put in charge of watching him when my parents stepped out for a minute. Evan had his eyes fixed on the TV, staring at it with his right hand on a shelf and his left hand on his side. He聽was just so fixated on that TV. My dad came聽in and tried to get Evan鈥檚 attention, but he wouldn鈥檛 budge. My brother鈥檚 face started to lose color and slowly turned blue. We rushed him over to the nurses that were down the hall, where they said 鈥淗e isn鈥檛 breathing!” One of the nurses gave him the breath of life which got him breathing on his own again. I stood there watching, thinking my brother had died. Evan suffered another seizure later that night, and had to be moved to the PICU. My brother ended up being OK, but this was one of the scariest moments of my life.

Even though my family and I have gone through so much relating to my brother鈥檚 hemophilia, we鈥檝e never treated him as different. My brother has been so brave in talking about his condition with people who are curious about his port protruding from his chest. There have been conversations about why he shouldn鈥檛 play certain sports. However, at family events, when everyone plays football and soccer, I have been truly amazed at how my family remains aware of his needs and includes him in everything.聽

One of the hardest questions I have ever been asked is 鈥淚f you had a magic wand that could take away your brothers hemophilia, would you?鈥 And, I feel as聽though I shouldn鈥檛 be the one to decide if he 鈥榮hould鈥 or 鈥榮hould not鈥 have hemophilia. Selfishly, hell yes. Without a doubt in a heartbeat I would take that away for him. But, hemophilia has become so much more for my brother, myself, and my family. It is a community, a vessel for my brother to become the person he is today.

Sara

Photo Caption: Sara (mother), Noah, Evan, and Michael (father)

Hemophilia has become a part of our聽family, and most importantly, it鈥檚 the reason why my brother has met so many amazing, brave, smart, and funny people. So, no, I guess I would not take away his hemophilia. I would however, use my magic wand to make his factor cost significantly less money.

My wishes for my brother as he grows up are:

  • For him to know that he should never be afraid or ashamed of who he really is.
  • For him to not allow himself to set boundaries because they will stop him from living life the way he truly wants to live.
  • For him to never let hemophilia be a boundary, but instead a reminder聽聽that he can do anything he sets his mind to.

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Noah is 16 years old and lives in Tampa, FL with his family.聽

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