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Group Needs Help To Create Clinic For Girls With Turner Syndrome

AURORA, Colo. (CBS4) - There are approximately 80,000 females in the United States with a disease many probably never heard of -- Turner syndrome. It's a rare genetic disorder that can lead to serious health problems.

Now a group wants girls with Turner syndrome to be able to get the medical care they need in a one day-long clinic visit, and they want to offer families support and education.

Alex Boyle
Alex Boyle talks with CBS4's Kathy Walsh (credit: CBS)

Like most teens, Alex Boyle is hooked on social media. As a recent high school graduate, she's testing to be an esthetician, and Alex has big dreams of moving to the Big Apple.

"And hopefully be attending school out there for religious studies," Alex said.

But Boyle has challenges. She was born with Turner syndrome.

"One in 1,900 girls are born with it," Alex said.

The cause of Turner syndrome is a missing or incomplete X chromosome. Girls who have it are short, their ovaries don't work, and they can have serious health issues.

"Ear problems, heart, kidney, liver, neurological development, nonverbal learning disabilities," Alex's mother Kathy said.

Over the years, Kathy has gotten Alex ongoing care, but it's been a struggle.

"You'll be going to your pediatrician and then all of a sudden you need to see an endocrinologist, and then your endocrinologist says, 'Have you seen a cardiologist?' " Kathy said.

So Kathy, Alex's grandmother Florrie Katchen, and other Turner syndrome families are bringing all the specialists together. They are raising money to fund a monthly clinic at Children's Hospital.

"This will make people's lives so much easier," Kathy said.

Alex knows she won't reap the benefits.

"But I think it's great that those who are coming after me can," she said.

The goal is to get the clinic open in April of 2015. This Sunday, the 3rd annual Walk for Turner Syndrome Awareness will be held at Hudson Gardens and everyone is invited. The hope is to raise $25,000 to help fund the clinic.

LINK: Walk for Turner Syndrome Awareness

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