Charlotte's Story Written by her Mom, Nicole
Though she be but little she is fierce!
This quote is the definition of my little hero Charlotte. She came into this world quietly, no crying, no screaming just silence. It was as if this little 4 pound miracle was just looking around the room like, oh hey this is new. She just looked around with her big eyes until she found my face. I had a traumatic pregnancy to say the least, so Charlotte and I had a bond stronger than the Gilmore Girls from the start. Two months later we were snuggled in bed on a Sunday afternoon when it happened, her first grand mal seizure. It was the longest two minutes of my life and began a long road of neurology appointments, needle sticks and anticonvulsant medications. After rushing her to a local hospital not setup for a tiny 6 pound infant, she seized again in front of a nurse this time and a transfer was setup to a larger more prepared hospital. Days went by as I learned all these Grey's Anatomy terms; EEG, MRI, CT scan, WBC, CBC, and the worst of it all Spinal Tap! Watching your two month old writhing from pain while seeing a large needle inserted into her teeny tiny back is going to haunt you. It was the moment I knew in my heart that she was not going to be like my oldest daughter or other typical kids. Three days in that hospital and she was diagnosed with idiopathic epilepsy. In case you were wondering idiopathic is a term that basically means we have no clue what's causing this and we probably never will. So medications, discovering her triggers, learning all the different types of seizures (oh yeah there's so many and of course she had 3 different kinds), and hospitals were the beginning of our new special life.
We moved back home to sunny Charleston before her first Christmas and Charlotte celebrated by rolling over for the first time at 9 months! Better late than never are words to live by. Early intervention and therapy was added to our already full time plate. Speech, occupational and physical therapists soon became some of our dearest friends. Our neurologist recommended some additional testing that could really benefit Charlotte and knowing exactly why these seizures tormented her. September 25th, 2013 (the day after my oldest Kaylin turned 6), we had results from her DNA testing; at 18 months old I was told Charlotte had 1p36 deletion syndrome. I was almost giddy we had an answer after 16 months of uncertainty. Until they started telling me what she would never do...
NEVER be independent
Then my world collapsed. I had to officially mourn the life I had dreamed for her. The life where she would skip into her first day of kindergarten, learn how to ride a bike, play softball or volleyball, dance at her school prom, graduate high school, go off to college, but the two hardest things were that I wouldn't get to walk her down the aisle to marry her other half or be in the room to help her give birth to her first born. I had so much anger that this extraordinary tiny human just had the life she deserved ripped from her before it truly began. However, this fierce little girl could not be told NO that she couldn’t do something.
Two weeks before her fourth birthday, Charlotte took her first independent steps during physical therapy! It was truly a miracle, and luckily her amazing therapist caught it on video so everyone can relive that grand occasion when she proved the doctors wrong! Charlotte is five now and is able to almost run, jump, say over ten words, and sign for all the animals (because Signing Time’s the Zoo Train is her favorite)! Everyone who knows her says that she is pure joy. Charlotte has the most amazing belly laugh complete with her momma’s snort. This little miracle is changing the lives of everyone who simply hears about her amazing strength and tenacity.
Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to 1p36dsa.org. Shop For an Amazing Cause.
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