By Anna Harmon, Paxtyn’s Mom
Paxtyn was born with a rare genetic condition called Apert Syndrome which affects about 59 babies a year. It causes early fusion is the sutures in the skull, webbed fingers and toes which have no joints, cloth soft palate, condensed nasal passages and eye sockets which causes the eyes to bulge and breathing difficulties such as sleep apnea.
We did not have a diagnosis before birth, we spent about a month in the NICU with her on oxygen and many tests being done. We have had many, many hospital stays and surgeries at Nationwide Children’s Hospital. Specifically, Paxtyn has had 3 major head surgeries, 3 surgeries on each hand, a surgery on each foot, a cleft palate repair, ear tubes inserted, adenoids removed, treatment for thinning of the tissue in the sinus area and a skin graft.
We still have a lot of surgeries coming in the future. Despite everything Paxtyn has been through and all the delays, she’s still our spunky, wild, full-of-attitude two-year-old. She is adored by her siblings Prestyn, Paisley and Peyton. Paxtyn loves baby dolls and CocoMelon and playing outside like any other kid. She’s definitely defeated all the odds. Paxtyn is so loved by her entire family.
“The best view comes after the hardest climb”