Amy’s Story

We got a call one cold and rainy September morning that a little girl born to die was waiting for her family. She was nine months old and 9 pounds. When I asked to see her hospital files and records, they brought me four giant boxes full of them. The most heartbreaking sentences were the ones that said mom and dad couldn’t be convinced to stay with her. Mom stayed but that’s because she was homeless. Mom came to the hospital high on drugs. She was born to die, they told me. Take her home and make her comfortable. When we were in the hospital the doctors were making rounds and they poked at her eye. Doctor proudly announced to his group of fellow students that she had the intelligence of a carrot and would never amount to anything. She glared at him and bit him. True story. I knew in that minute that this was a little girl who was going to tip my world upside down. And she has.

When we brought her home it was hard to get food into her and would just get tired before she could finish a meal. A feeding tube was introduced when she was three, and at that time she was still only 19 pounds. They insisted we use formula, and she threw up on just about everything. I timidly asked if I could try food with her. I was sent to the hospital’s feeding program where they proceeded to purée the most unhealthy and nasty foods out there all for the sake of sugar and calories. I went home mad and started my own journey. After finding out she had a mitochondrial disease, I knew we had to feed her differently. Real, nutritious food became a part of our journey. She is now eight and she has lived years past her prognosis. I attribute it to the fact that she is so feisty and full of fire. She also probably eats healthier than anyone else in the family LOL. But that’s something we’re working on. Her diet helps support her mitochondrial condition and gives her the energy to grow and gain. She’s no longer “failure to thrive”. And for that I’m thankful. More parents need to know that there are healthy options out there. By the way, we like the peptide formula. That has been a lot easier on her stomach and the calories are phenomenal because she needs them.