DAILY LIVING & MOBILITY

Aerilyn's Life with Trisomy13

Cerebral Palsy (CP)

Aerilyn & Lely

"Your child's condition is incompatible with life"

Hi my name is Aerilyn! I was born March 29th 2014 at 4lb 3oz a little peanut with a unique smile. At 26 weeks unexpected news of my medical condition shattered my mommy and daddy's heart. I have Trisomy 13 also called Patau syndrome, it's a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year.

"I am a Fighter"

That's who I was to the medical professionals, a dismal diagnosis incompatible with life. My parents were given the option to terminate pregnancy as if it was the only choice for someone like me. Not convinced, my parents decided the only option I had was to be loved and supported regardless of the unknown journey ahead. After birth I had many challenges to overcome! 8 surgeries which involved reconstruction of cleft lip & palate, feeding tube placement, and many other necessary procedures. The first year I was battling to make my mark on the growth chart because I was labled "failure to thrive". I was able to beat and rise above all those challenges and many others that wanted to demean my life with labels! ("Failure to Thrive" "Incompatible to Life") I start Pre-k next month! I'm also turning three years old with a flare for fashion and oversized bows! My smile & laughter lights up a room! My big brother adores me! I have a family that LOVE and support me! And a world of possibilities ahead of me. Bottom line is, labels/diagnosis are NOT a prediction OR the only definition of your life! Trisomy13 is a part of me BUT it's not the only definition of who I'am..."a Fighter"

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