To the mom raising a child with a rare disease—I see you
I have battled with chronic, and at times, crippling anxiety my entire life. When my son was first diagnosed with his rare disease all I wanted to do was figure it out.
At 3 months old, my son was diagnosed with a rare disease called MCADD, which stands for medium chain acyl-COA dehydrogenase deficiency. It’s a fatty acid beta-oxidation disorder, which means that his body has trouble breaking down certain kinds of fats to use them for energy. This can become dangerous and cause a low blood sugar (hypoglycemia) event if he’s in a situation where he’s unable to eat, such as having the stomach flu or food poisoning. It also affects how long he is able to go without food safely.