Recognizing academic achievementin the rare disease community

2016 Recipient

2016 Recipient


Nathaniel-Full-Image

Nathaniel

18 years old
Stanton, Michigan


High school:
Homeschooled in Stanton, MI
Graduated May 2016.


College:
Westshore Community College
Ludington, MI
Fall 2016.

Rare disorder:
I have eosinophilic esophagitis or EoE. I was diagnosed when I was about 10 years old, and was also diagnosed with Crohn’s disease a few years later. EOE is an autoimmune disease which causes me to have dozens of food and environmental allergies. I was sick often, didn’t grow well, and threw up a lot. When I was 10, I choked on a piece of hamburger and it was stuck in my esophagus and had to be removed surgically. After this food impaction, I was diagnosed with EoE. Since I’ve been diagnosed, I’ve had 30-40 endoscopy procedures and have worked with my doctors to identify foods that I could add to my diet through a number of food trials. Now I’m on a very limited diet, but before these trials I was fed via a gastrostomy tube or g-tube. My dad is a pastor and I’m a Christian and firmly believe everything I’ve gone through has been given to me by God and has made me who I am today.

Favorite subjects:
I loved my computer classes, especially coding and digital design. I also enjoy reading about history, and I’ve always excelled in literature and English classes.

Favorite activities:
My favorite activity has to be playing music. I have been playing percussion in a community band for the past 5 years and I also play guitar, ukulele, didgeridoo, handpan drum, and other obscure instruments. I also enjoy tinkering with electronics and taking things apart to build something new. Recently, I’ve been trying to make my own handpan drum. It will require me to cold-forge and learn to tune metal. I’ve spent 6 months so far making one and it only plays one note, so I have more work to do.

Academic and professional plans:
I’m looking at pre-engineering for a major. I want to finish my BS degree and find work that allows me to combine my engineering degree with something on the creative side. I may also pursue a business degree. Ultimately, I want to be able to create and develop new products or technologies that have a basis in engineering, but represent a unique twist on something that already exists to make a new product, or use an existing product in a new and helpful way.

Proudest moment to date:
First was graduating high school, and second was being awarded this scholarship. I’m so glad EoE was added to the rare disorders covered in Shire Aces. I found out about the scholarship through an organization called CURED (Campaign Urging Research for Eosinophilic Diseases). I would love to help bring awareness and raise funds for CURED as they have helped me.

How I found out I was the ACES 2016 recipient:
I was taking a shower and I heard my mom scream at the top of her lungs and she started pounding on the bathroom door. I’m drenched and grab a towel and follow the screams to my mom. She hands me the letter crying and I was worried it was bad news, but it was the Shire Aces acceptance letter saying “congratulations” and I knew exactly what it was. I was so excited.

Advice for students applying for ACES next year:
Never stop dreaming. Don’t let your disease hold you back; don’t let your circumstances stop you from achieving your goals. I’d tell students to focus on the positive and while it can be hard going through the muck of your disease, focus on how your struggle has made you stronger. Don’t look at your limitations but focus on the possibilities. Dream big and work hard!

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