Haley’s Story

November 2021

My name is Haley Hayes. I am from Virginia. I am 16 years old and was diagnosed with infantile-onset Pompe Disease at 6 months old.  I will be sharing my experience being a teenager living with Pompe and how it has affected me over the years.

In the beginning, my parents, the doctors, and nurses could not figure out what was wrong with me, but they knew that something wasn’t quite right. My parents started to notice that I wasn’t gaining weight like I was supposed to, I was not drinking as much as I should have been, and I was a very colicky baby. After some lab work was done, the doctor instructed my parents take me to the hospital to be admitted. Within a few days, I started to go into congestive heart failure. It was a few weeks before the doctors knew the reason for my heart complications. My parents were told the blood work was positive for infantile-onset Pompe disease.

Growing up with Pompe Disease is a little bit different than others may live their lives. I have used lots of equipment over the years that other kids my age has maybe never had to use before. Things like wheelchairs, standers, cough assist, and leg braces. Thankfully some of these pieces of equipment I do not have to use as much as I used to, but things like the wheelchair I still use every single day.

Going to many doctor’s appointments over the years is something that has always been difficult for me. They’re all long and tiring days, but they’re all worth it because I am getting the care that I need. Growing up I had to go see doctors like a pulmonologist, geneticist, cardiologist, neurologist, and many others. Thankfully I do not have to go to as many doctors as I used to, but I still go every 6 months to a year for all of my checkups.

Weekly infusions have become a part of my life for as long as I can remember. When I was first diagnosed, starting ERT was the only option for treatment at the time. My infusions used to last all day and by the time I got home from the hospital, I was just so tired that I was ready for bed. At the hospital, I filled my day by doing things like playing video games, doing art, getting to know people more, playing the guitar, and singing. I have been doing home infusions for 6 years, and I love hanging out with my nurse to make the time go by fast.

As far as school and being out in public, I used to always get nervous in previous years that I would get bullied, and be called the girl who can’t walk and had to be in a wheelchair all of the time. I am very blessed that almost everybody that I see likes to make friends with me, and all are really nice. Of course, you have a few here or there who will say “why is she in a wheelchair?” When they asked me those questions, I would use that time to explain to them what I had and they would get to know me better. When I was younger that used to make me upset, but now it doesn’t faze me and I understand why people may ask that question.

Hanging out with my friends has always been a challenge since I have special needs. When I have wanted to hang out with friends sometimes that was limited to me because of the care I need 24/7. My parents and I always try to figure out a way where I can hang out when my friends. My friends always come to my house and hang out with me, have sleepovers, and etc. I love hanging out with my friends, so I will make it work out to the best of my ability to where we can hang out.

In regards to having a diagnosis of Pompe Disease or really any other hard situation you may be going through, just remember to stay positive on the journey! Bad things may come your way, but just remember there is always something positive in each situation. Don’t say you can’t do something until you try, because sometimes you may say that, but then in reality you can do it! Just don’t give up!

Thank you all for taking the time to read my story! I really hope that this has inspired you!

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