KANSAS CITY, Mo. -- Most of us don't expect a party when we go to a doctor's appointment, but that's exactly what girls with one medical condition get.
Fifty girls recently enjoyed pampering, crafting and gifts. Each received Shadow Buddy and American Girl dolls.
"That was a really big surprise," said Audrey Pool.
The party at Children's Mercy's Broadway building was for girls with Turner Syndrome. They were born with only one normal X chromosome, and that can cause growth, heart and infertility problems. About one in 2,000 girls has it. Three days a year, the girls and their families gather for some fun and their medical appointments.
"I sensed a lot of frustration from families that they weren't getting the answers they wanted just from the medical community," said Dr. Joseph Cernich, an endocrinologist at Children's Mercy.
So he created the unique model of care five years ago along with Kelly Ranallo whose teen daughter has Turner Syndrome. Ranallo says families from a six-state region gain "the ability to connect with somebody else who knows exactly what they're going through and has walked in that journey."
It's called the Great HeighTS Clinic because girls with Turner Syndrome are shorter.
" From November to today, I grew an inch!" said Audrey.
She's growing with hormone therapy.
"It's great for us parents to have each other as a resource, and they bring in educational speakers," said her mother, Michelle Pool.
Some of the parents recently started a non-profit organization called the Turner Syndrome Global Alliance.
"The goal of the alliance is for Kansas City to be a leader in pushing for TS research," said Ranallo.
The clinic is being replicated in other cities.
"I really like meeting people that are just like me," said Audrey.
They are girls having some fun and tackling their health challenges.
The first annual Kaleidoscope Walk for the Turner Syndrome Global Alliance will be held on Sunday, April 19, at Ironwoods Park in Leawood. For more information and to register, click on this link.