Happy Birthday Lola!

Image Credit Dear Lola, Today, my darling sweet girl, you are four years old. Four years ago, you came into this world with your own agenda — to make it a better place. And you’ve done just that. You inspire strangers and impress everyone who knows you. You have been handed challenges, but the way you gracefully navigate through them without fuss make your challenges seem unimportant. You are a fighter. Your ability to persevere even when life knocks you down is a trait you developed on your own. I wish I could take credit for this, but lord knows Mommy isn’t as strong as you baby girl. But you make me stronger each and every day. You help me realize spontaneity is an unappreciated characteristic of life....
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NR2F1

NR2F1. This combination of five letters and numbers meant absolutely nothing to me until a few weeks ago. Now those five letters and numbers have given us the answer to, “Why Lola?” They are the sole reason why the course of Lola’s life changed so drastically. They are the letters and numbers making up a long awaited diagnosis. When I first received the call from neurology informing me a diagnosis had been found, I was elated. I quickly called Rob, my mom, sent out texts, posted on Facebook and Instagram. I was ecstatic. We finally knew what exactly we were up against. The main symptoms were optic atrophy (Lola has CVI and small optic nerves) and intellectual disability (she is globally delayed). We would have to keep an...
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