Our Kids /
Raechel
Methylmalonic Acidemia, Cobalamin C, Age 20
Raechel is a 20 year old sophomore at Christopher Newport University in Virginia. She was born with MMA CblC, before it was part of the newborn screening panel. She was actually diagnosed day two after birth by sheer luck by her caring and curious cardiologists who had followed her since 20 weeks gestation for a cardiac anomaly. But that is a whole story in itself.
She is legally blind, but is in the CNU marching band as a trumpet player, and she is majoring in American Studies with a double minor in Philosophy of Law and Criminology. The University did a feature on her and you can see it here.
https://cnu.edu/news/2023/10/25-sswa-s26-erler/#skipheader
Yes, I am proud of her and all she overcame – the 8 weeks in the NICU after birth, the 12+ weeks of hospitalizations over her first 9 years, the battle with protein and medications and finding the right balance of each. (Again- a whole novel could be written about this.) What I am most proud of is how she is growing despite her disabilities and disorder, and she wants to make a difference in her future and the future of others, and she will not let anything stop her. She asked me to share her college application essay with this audience (and she was accepted to every college she applied to, by the way). So here it is. Thank you, our OAA family, for reading.
…………………………..
I’m a miracle child. I wasn’t supposed to be born, let alone writing this essay to apply to college. I was born with a genetic disorder called MMA, which affects my vision, metabolism and my heart. When I was in the womb, my heartbeat was very irregular and had poor function. My mom says that it sounded like a badly played drum. The doctor said that because of my heart, I would never be born. Then something miraculous happened. At 35 weeks, my heart started working normally, and at 38 weeks, I was born. But that was only the start of my obstacles.
I was hospitalized over a dozen times before I turned nine, and I experienced two emergency helicopter rides to the hospital. Now, of course, I don’t remember what happened, but I’ve heard one of the stories multiple times. My mom was at work when she got a call from my nanny, Elizabeth, who said I was very sick. Although my temperature was only 101, a temperature at which one should be conscious, I wasn’t moving. When my mom got home, she discovered that my nanny had misread the thermometer, and it was really 107. Immediately, my mom called 911, and I was airlifted to Children’s Medical Center. The doctors tried everything, but they couldn’t get my temperature down. My mom kept trying to persuade the doctors to get ice packs to put under my arms, but they kept saying that it wouldn’t work. Finally, the doctors gave her ice packs, and within 20 minutes, my temperature came down. Once again, I shouldn’t have survived.
Even though I haven’t gotten that sick or been hospitalized in a long time, I still face obstacles every day. My heart doesn’t pump as strongly as it should, and I have no central vision. I take medicine each day and have regular doctor’s visits. But I will not let this or anything stop me. I love music, so I joined my high school band and marching band. Since I don’t see as well as most people, I am unable to site read music, so I have to have someone record the music and send it to me so I can memorize it. When I am learning my position for a marching band show, I ask someone to help me find my spot since I can’t see my position sheet, and then I memorize where I need to go. Despite all of my obstacles, I was recognized as the best freshman marcher. I’ve been a part of the band for 8 years and marching band for 4, and I enjoy every minute of it. If the doctors hadn’t caught my disorder when they did, I’d have a lot more problems than I do and probably wouldn’t be participating in either band or marching band, or even school.
It’s hard to pick just one lesson that my disorder has taught me, but the most important one is that people shouldn’t let a disability get in their way. Even with my disorder, I’ve never let anything stop me. If I want to do something, I find a way to do it. I not only marched with the band, but I auditioned for section leader and succeeded in getting one of the two section leader positions. The other lesson I learned from what I’ve experienced is that sometimes in life people have to reach for their goals no matter how hard they may seem, because a person never knows when their life may end. Even though I know there are goals I will never be able to obtain, I reach far because I want to make my life the best it can be.
Raechel (and mom Melanie)
Virginia