Albion student, 13, and family deal with Prater-Willi Syndrome daily

Jamie holds a book of cards and notes she received from fellow students at Boone Central Schools during her hospitalization for the back surgery. Her mother made them all into a book for her.

By Twylla Crosby
Jamie Mewhirter, 13, an eighth grade student at Boone Central Schools, is reading the fourth book in the Judy Moody books, and loves her two older sisters, and her little dog, Lucy.
Jamie and Lucy are in canine 4-H. Jamie plays alto saxophone in band, plays basketball, runs track and has a friendly horse “who protects me” at S.M.I.L.E., where she rides a couple of times a week.
“I love school, I have a lot of friends there,” she said.
Jamie also has Prater-Willi Syndrome (PWS).
Seeing and visiting with Jamie today, she is nothing like when she was an infant. At that age, her parents, Chris and Kim Mewhirter, would have to “…strip her naked and put a nice cold washcloth on her to wake her up,” Kim said.
Jamie is their third child and third daughter, but Kim had no idea there was a problem.
“But Chris knew right away,” she said. “It took a little convincing of me that there was something wrong. But she didn’t want to wake up. She just didn’t want to do anything. She was just kind of floppy.”
When Jamie did wake to be fed, she struggled to nurse and ate very little.
“It was at six weeks when we finally went in (to the doctor) and said . . . “this is not working, what we’re doing.”
“By that point, she would only eat just a little bit for me. So she was definitely struggling, and we had to keep waking her up,” Chris said.
The pediatrician agreed that there was a problem and arrangements were made to tube feed Jamie.
That was the only way she was eating, Chris said. “There was weak muscle tone everywhere so anything that takes muscle or coordination or anything like that was delayed,” Chris explained.
Their pediatrician noticed Jamie’s eyes were kind of almond shaped and told Chris and Kim they needed to take Jamie to Children’s Hospital in Omaha, “because she isn’t thriving very well.”
“I can’t remember if she had recently read something about Prater-Willi Syndrome,” Kim said.
The pediatrician notified the doctor they were to see and possibly mentioned her suspicions, because that was what Jamie was tested for.
While at Children’s, Jamie became healthier and the genetics test was run to verfy PWS.

MEWHIRTER FAMILY includes, l.-r., Niki, Ashley, Chris, Jamie and Kim (holding their dog, Lucy).

Read the complete story in the July 18 Albion News & Petersburg Press, Print and E-Editions.