Wednesday, March 7, 2012

How Hemophilia Has Shaped Who I Am: A 10-year-old's perspective

Hi! My name is Dillinger. I have severe hemophilia A. I have to get infused in the arm every other day. My earliest memory of having hemophilia was when I was three or four years old and I got my port put in at Children's Mercy in Kansas City. A port is something that doctors put in your chest or stomach that connects to your heart so that you can get poked in the port with meds that will help your blood to clot. Even though I lived in Wichita, Kansas, I had to go to an HTC a few hours away because neither Wichita nor anywhere else close by had a Hemophilia Treatment Center.

Around the time before I got my port put in, I did not know what hemophilia was or how I got it. When I was little, I barely cared or noticed it. I just thought it was a sickness I had to take care of for awhile. Why? I have no idea. I was really curious though. That's what got me thinking I want to become a doctor when I grow up. That's all I remember. Now I know hemophilia is a blood disorder in which my body does not clot, so I need my meds. My mom is the one who taught me everything I needed to know about hemophilia.

My mom (and camp) taught me how to mix my meds and infuse. Now I infuse, by myself, in my arm every other day. If I get a bleed I might have to infuse extra doses to heal, but I do not get bleeds very often because now that I'm older I have learned to settle down and do stuff that will not hurt me very much. Getting bleeds is sort of unexplainable because they feel different every time.

When I was a kid, I didn't care for hemophilia, but I didn't really pay attention to it. My feelings have changed a lot from when I was a kid to now. Now I feel embarrassed about having hemophilia, because sometimes I have to go to school on crutches or I get bloody noses and everyone stares at me. When I get hurt, I have to go straight to the nurse's office (unlike other kids) and I get hurt more easily and more often. It makes me feel different.

What I like about hemophilia is going to camp because I can do things I usually cannot do, like be real active and play sports without getting hurt because lots of people are watching and can take care of me if I get hurt.What I do not like about hemophilia is getting up early every other morning on weekdays to get an infusion before school. It's very boring and I wish I could sleep more.

I think doctors will hopefully find a cure sometime in maybe 5-20 years because it may be soon or it may be longer. I don't have the direct time, but I'm pretty sure it should be between those years.

Having hemophilia makes me feel different from other kids at school and in my neighborhood for many reasons. I cannot play rough (run, jump, play games like football...). I have to infuse myself every other day. I could get hurt easily. I could probably name them all day, but see, that doesn't matter to me. I have an awesome life and I don't ever want to ruin that. Hemophilia has played a large role in shaping who I am today and I wouldn't want who I am to be any different. But I would be honored if anyone helped find the cure.

12 comments:

Valinda said...

You're an inspiration to me Dillinger! Makes me feel ok about my son's future. From: a hemo mom. :)

Neil said...

Great post and good read Dillinger! Keep it up, they are good for us parents to read and will be great for kids like my son who is a baby right now and has hemophilia to read some day.

Boys like you are who kids like my son and others in the hemophilia community will look up to.

Ryan said...

Awesome post Dill!!! High five my little blood brother!

Dillinger Gould said...

Thanks a lot for the nice comments. It makes me feel good about myself.

tjay said...

Thanks Dillinger. I found your post because I was searching to learn what it feels like to have hemophilia. Thank you for being so patient and thoughtful. Thank you for teaching me.

Dillinger Gould said...

Thank you tjay. I appreciate your nice comments.

Anonymous said...

Love your attitude kid.. . Keep seeing life in a positive light.. My son is 3 & 1/2 years old and has severe hemophilia A. Sometimes life is not fair, but you have to keep working hard and stay positive and good things will happen.

Dillinger Gould said...

Thank you very much i'm glad and appreciate that you liked my story.

Sylvia Serrano-Smith said...

Great job! Never give up, keep believing for the cure. Your story gives others hope and courage to live life to the fullest. There are still some people left in this world that do care and will play their part in contributing to causes such as yours.

Greg Price said...

Your my idol and inspiration to change the outlook on what hemophilia is and how it affects people! I don't know if you remember me but you are the MAN...help mom and dad (mark) and help with the family buddy! I know Hemo is tough but living can be much tougher...always lend your family a helping hand and keep doing what you're doing!

Sarah said...

Dillinger, thank you so much for sharing your experience and thoughts with the rest of us. 2 of my children have severe hemophilia A, and it helps me know how they feel to read your words. I will share your story with the other parents out there who will also be encouraged and inspired by what you have to say. One little saying my 5 year old and I say about managing hemophilia is: "Don't be scared. Be smart!" He's a tough little guy too, and a great example to his little brother who also has hemophilia.

Anonymous said...

Dillinger, thank you for this inspiration, about a month ago I found out my 7 month old son has severe hemophilia, your a great example and role model for other kids thank your for sharing your experience. God bless you and your family

Post a Comment