A Caregiver's Perspective: The Unaffected Sibling

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 ‘normal’ life. I remember crying to my mom and saying “How could this happen?” Every time I made a wish in a fountain, I wished that my little brother could be healthy. That’s all I wished for. Why couldn’t 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 was just so fixated on that TV. My dad came in and tried to get Evan’s attention, but he wouldn’t budge. My brother’s face started to lose color and slowly turned blue. We rushed him over to the nurses that were down the hall, where they said “He isn’t 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’s hemophilia, we’ve 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’t 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. 
One of the hardest questions I have ever been asked is “If you had a magic wand that could take away your brother’s hemophilia, would you?” And, I feel as though I shouldn’t be the one to decide if he ‘should’ or ‘should not’ 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.
Hemophilia has become a part of our family, and most importantly, it’s 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 that he can do anything he sets his mind to.

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

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