EGL Genetics Blog

How Sickle Cell Disease Changed My Life

Posted by Danyella Davis on Sep 1, 2016 11:30:00 AM
According to the Center for Disease Control and Prevention (CDC), sickle cell disease (SCD):
  • Affects approximately 100,000 Americans.
  • Occurs in about one out of every 365 African-American births.
  • Affects about one out of every 16,300 Hispanic-American births.

But behind these statistics are children and families affected by this debilitating genetic condition. EGL and the "My Beautiful CHILD" community are pleased to support Sickle Cell Disease Awareness Month by promoting education and advocacy for those impacted by SCD, and sharing stories such as this month's featured "My Beautiful CHILD," Nazhi. A powerful 12-year old shares her journey with SCD and her early contribution back to others impacted by this genetic condition.

 

Our thanks to Nazhi, our youngest blog contributor and recent participant in the EGL My Beautiful CHILD campaign.

 

Screen_Shot_2016-08-10_at_11.14.22_AM.pngScreen_Shot_2016-08-10_at_10.54.17_AM.pngScreen_Shot_2016-08-11_at_8.58.12_PM.png

Hi, I'm 'Princess' Nazhi, the baker. I am a 12-year-old chef. I started baking at the young age of 10! My real name is Ri-Nazhanae, which includes part of my mom's name as well as part of my dad's name. I don't really like putting it out there because as far as I know, I am the only Ri-Nazhanae in the world, and I hope it will stay like that because I love it and its uniqueness!

I have been battling sickle cell anemia since birth and thought I would spend the majority of my life in a hospital. After the tragic experience of witnessing my older sister have a massive stroke in 2014 and learning more about the history of our overlooked disease, I decided to find new and tasty, yet healthy foods for those struggling with sickle cell to eat.

It definitely was a struggle finding something healthy to satisfy my sweet tooth, and that's when it hit me. Why not combine organic ingredients to make something sweet? So, I persuaded my parents into letting me try my hand at baking. They were originally against it and were convinced that it would only make me and my sisters sick, but decided to give it a go anyway.

Screen_Shot_2016-08-11_at_8.58.58_PM.png

Nahzi and her two sisters stop by HOT105 radio station in Hollywood, FL., to promote sickle cell awareness along with her baked goods. 

I did some research about products without GMOs and quickly got to work. I started off with peanut butter cookies and to my surprise, they tasted really good! What made them even better was that they didn’t make me and my sisters sick. I refused to stop there. I found myself wanting to bake more and more, adding different ingredients and trying new recipes, but it still wasn't enough. That's when I decided that cakes would be more fun and creative, something like a masterpiece.

I quickly got to work and gathered the healthiest ingredients to make my first cake; it was a pound cake. I found myself working day and night to perfect my little masterpiece. My ultimate goal is for kids like me to be able to enjoy a little slice of heaven without being sick.

To view more My Beautiful CHILD content visit the MBC Archive.

 

 

Topics: Sickle Cell Disease

 

 

Subscribe to Email Updates

Posts by Topic

see all