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Charity's Story

Written by Natasha Joy

Charity Kay is an energetic, sassy, 100% girly girl who's definitely had her ups and downs. She's now a 6 year old finishing up kindergarten.


Charity was born 3 months early on February 20, 2013 at 4lbs 0 oz. 19.75 inches. Her long list of health issues include: Trisomy 14, Epilepsy, recurring pneumonia, rare gene mutation(different then the t-14), autism, sever sensory issues, anxiety and panic attacks, muscle hypotonia, speech and development delays, immune system problems, ulcerative colitis, prematurity, chronic lung infections, asthma, hairline veins, premature air ways (lungs) and growth retardation (hard time gaining weight).


She has had so many blood tests I have lost count, many hospital stays, 40+ cases of pneumonia, 4 cases of RSV, 4 MRIs, 6 EEGs, EKGs, 3 swallow studies, surgery on her eyes to fix severely blocked tear ducts (surgery failed in left eye), surgery to correct a sever tongue tie, and surgery to remove her tonsils and adenoids. 2 CT scans, many ultrasounds on her hips and stomach, was on high flow oxygen for over 18 months, on 2 different neb treatments (when needed).

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photo courtesy of Charity-Kay Charbear

Charity's care team includes a PCP, geneticist, pulmonologist, genetic counselors, 3 therapists, neurologist and more that sees her if needed.

She loves dance and cheer and all things girly. She been in dance the last 3 years and is really improving her skills, and has been in Cheer for the last year.

Follow Charity on Facebook: Charity-Kay Charbear

photo courtesy of Charity-Kay Charbear

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