What is normal?

The story of Reece

My name is Reece and I am about to turn 3 years old. I was diagnosed with Glycogen Storage Disease when I was 20 months old, after multiple hospital stays and testing. My mom always knew something was wrong, because I would nurse all the time and my twin sister would nurse and be fine, but all I wanted to do was nurse and then even after weaning, I was always hungry or grouchy. 

The hard thing about glycogen storage disease, or GSD is that it is a metabolic disease. There are few outward signs of attacks. My blood sugar can be very low, and I don’t show it on the outside, so my blood sugar must be checked a minimum of 6 times a day. I also always produce blood ketones, so those have to be checked too. The treatment for GSD is cornstarch and protein. Currently I take 20g cornstarch 6 times a day and 10g protien powder 6 times a day. I usually take it through my g-tube because it tastes yucky, but sometimes my mom mixes it with sugar free chocolate milk and I can drink it. As a toddler with a rare disease it is hard because I don’t understand why I have a strict diet, why I have to drink/tube feed cornstarch and protein or why I can’t eat cupcakes and ice cream. 

It’s also hard to people looking in from the outside. I look like a “normal” healthy little girl. I run, I jump, I laugh, I eat orally, I ride horses and I love my family. Few people have seen me very sick. Few have seen my body failing and in severe acidosis. 

I want the world to know that I am rare. I am special. My disease doesn’t own me, because I am Super!