Condition / Challenge:

Paternal Uni-Parental Disomy 14 or UPD 14

Celebrated For:

Kaylee is a sweet 10 year old girl who is going on 16!  She is enrolled in the 3rd grade at Kissam Elementary in Chapel Hill, but because of her health limitations, she has a homebound schedule.  Kaylee’s official diagnosis is called Paternal Uni-Parental Disomy 14 or UPD 14. Don’t worry, you are not alone, no one has ever heard of it before. She was the 15th reported case in the world. Because not much (hardly anything) is known about her condition, she is writing her own story.  Other diagnoses have come up over the years and include:  Trach dependent, ventilator dependent, g-tube dependent, general hypotonia, respiratory insufficiency, restricted lung disease, cleft palate, dysphasia, scoliosis, vertical talus, and hydrocephalus.
Kaylee’s parents were told that it was unlikely she would walk, talk or be able to do much more than sit with assistance.  Kaylee’s determination and hard work has made all those things possible!  It didn’t happen quickly, but it did happen!  Kaylee is now a walking, talking, reading, texting 10 year old girl.  Her pediatrician and her mom joke about it sometimes, saying “She’s not supposed to be doing that!”
With Kaylee’s special circumstances, she has been limited in her exposure to other children.  Because her immune system is very fragile, she has a homebound teacher that comes to her house twice a week for a total of 4 hours.  In August 2015, Kaylee began taking an art class at Bless Your Art.  The class is once a week and there are only a handful of other kids that come so it makes for a perfect environment for Kaylee to express herself through art and also socialize with kids her own age.

“Kaylee is a “girly” girl, and loves being pampered, getting pedicures, getting her hair done and looking fancy!”