When someone says the word “resilient,” you may evoke an image of a boxer in the twelfth round, scrapping together all of his courage just to make it to the bell. You may picture an athlete, continuing to run even as the blood begins to pool in his sock. Your instant response may be many things, but it probably won’t be an image of a 20 lb. blonde haired, blue eyed toddler named Aubree.
After you read this story, you’ll have a hard time picturing anything else.
Aubree’s short history reads like a nightmare for every parent. She was born perfectly healthy, following an easy pregnancy. She developed completely normally until she was five months old. As mom Desiree put it, “Things just didn’t seem the same.”
While Aubree’s CT scans and MRIs were all coming back normal, she was rapidly regressing. She could no longer roll over or sit up, she stopped cooing and making sounds all together. She didn’t make eye contact or respond to any stimuli. She began struggling with chewing food and consistently rocked her head back and forth. It was a difficult, baffling time. Aubree, once a happy, playful, active baby – was now a shell of her former self.
“I cannot tell you how many times I have been told my daughter is a mystery,” Desiree told us. She has been tested multiple times for rare diseases – every single test has come back normal. On paper, nothing was wrong with Aubree. But her family knew that wasn’t the case. “I have spent countless hours online researching and looking up all of her symptoms. Aubree requires a genetic test that time and again has been denied by our insurance. If we are able to get this testing, it will tell us what to expect or be prepared for. It will let us know if there is a chance, or not, for a cure.”
Amidst all this uncertainty, one thing remains true: Aubree’s cheerful determination. She greets each day with enthusiasm and joy, and although her capabilities are more limited than they used to be, she doesn’t complain. She takes a few steps and stumbles. If she’s down, she’s never down for long. In as much as it takes you to blink, she’s up and trying again. To those who don’t yet know her, Aubree looks like a precious, angelic, two year-old. But beneath her porcelain exterior is a warrior – a tenacious and resilient spirit. A fighter who is never going to give up.
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