Samuel Aaron Harley
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My name is Samuel Aaron Harley, but you can call me "Sam". I was born in April 2003 with something called Holoprosencephaly which affects the way that my brain grows. We just call it "HPE" because Holoprosencephaly is really hard to say. My mommy's doctor took pictures of me when I was in Mommy's belly, and the doctors said that something wasn't quite right. The doctors got out a big textbook which told them that babies with HPE only have a 3 percent chance of surviving to be born. Boy, did that make me mad, so I decided to prove them wrong!
Daddy says that I’m a really brave boy. Being me isn't easy, but I do all right. Sometimes, I have seizures, but not as many as I had when I was a baby. I have a g-tube in my tummy, and I breathe with help from a trach. My last name is Harley, and when I have a lot of secretions and need to be suctioned, sometimes I sound like a motorcycle revving my engine! Vroom, vroom!
I really like to exercise and play, and I especially like to stand in my stander. I have therapists who come to my house and help me exercise. My therapists are trying to help me sit up better and hold my head up on my own. I also have nurses who come to my house and help take care of me, and they're all really nice.
- I also have a website if you would ever like to stop by for a visit. It's www.sammyyammy.com.
- Older Photos
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Love,
Sam
