Hunter

Hi, my name is Hunter. I am 10 years old and I have severe hemophilia. I love to play football, golf, tennis, baseball and basketball. I also like to play my bass guitar. I have gone to camp the last three years and like spending time with my friends there playing and just hanging out. I infuse myself at home three times a week. I used to have two ports but they broke! The thing I like the least about having hemophilia is: not being able to play tackle football. My advice to you is to ask your Hemophilia Center or doctor to teach you to poke yourself in a vein before you can’t use your port anymore!

Saverio

My name is Saverio and I am seven years old. I was named after his Grandpa Saverio who was born in Italy. I have severe hemophilia B. I was diagnosed a few weeks after I was born. I have been on prophy since my first birthday when I got my port placed. Right now, I get my factor through IV sticks and I hopefully this summer at camp I will learn to stick myself and get an award! I am in the first grade and I like reading and writing stories. My favorite sports are baseball, fishing, and swimming. During the summer, I like to spend as many hours as allowed fishing. I also like to play my DS and catch Pokemon.

Landon

Hello, my name is Landon. I am 6 years old and I have severe factor VIII hemophilia. I was diagnosed when I was 4 months old, but I don’t remember that! I really like playing basketball, riding my bike and playing Nintendo DS or Wii. I am just learning to read and love to read with my mom too. I read all kinds of interesting things. My mom and dad take turns infusing me every other day in a vein; I used to have a port, but now we just use veins. I would like to tell other boys with hemophilia not to cry when you are getting infused, sometimes it hurts, but it distracts your mom or dad! The thing I like least about hemophilia is not getting to do all of the things I want to do and not getting to play as rough as I want to all of the time.

Steve

Hi, I am Steve, and although I am not a kid or a teen, it hasn’t been that long since I was and I am hoping to be a mentor and someone for you all to look up to. I am 24 years old, and I was diagnosed with hemophilia A when I was born. The doctors knew to test me because my older brother has hemophilia too. I enjoy spending time outdoors, traveling, keeping fit and “artsy” stuff. In fact, when I was at Baylor University, my favorite subjects were art history and political science. I graduated in 2008 and now am out to find a career I love in International Marketing and Finance. My advice to kids with hemophilia is to try the things you want to do while knowing your bodies’ limits. The only way to know your bodies’ limits is to be outgoing in physical activities such as soccer or swimming while being careful. I am very supportive of reform that helps improve the lives of people with hemophilia; I believe it is important to have a say in your own care. I try to donate my time whenever possible to special events in the Texas Hemophilia Chapters. As far as having hemophilia goes, I usually find myself thinking how cool it is, that no matter what age or background, I can always find people with the same ideas and thoughts about a subject that it’s sort of like having a brotherhood.

Jakob

Hi, my name is Jakob and I have severe hemophilia A. I was diagnosed when I was 2 months old. There is no one else in my family with hemophilia. I got a port when I was 2 years old after suffering my first joint bleed in my knee. Ever since the age of 2, I have been on prophylaxis. I had my port removed when I was 7 because I out grew it. I loved having a port, but now we use my veins. My mom and dad do my infusions for me right now. I help to mix my factor and pull the butterfly needle out after my infusions. I communicate with my parents to let them know when they are running against the vein or when I feel the vein is “fixing to blow.” I always sit still and stay calm. My parents remind me that I am in control. My family works as a team to manage my hemophilia. This summer will be my first time to go to Hemophilia Camp. I am so excited! I hope to be able to infuse myself by the end of camp. I love riding my bike, swimming, playing golf, and creating new inventions from old toys. Having hemophilia is not always easy but it makes me a stronger, tougher boy. I am proud to have Hemophilia!