Marfan Syndrome - KLTV.com - Tyler, Longview, Jacksonville |ETX News

11/06/02

Marfan Syndrome

Kylye Roberson sets the dinner table for her mom Becky ever night. Just by looking at her you would think she's healthy, but this ten year old suffers from a deadly genetic disorder, called marfan syndrome.

Over the past four years her mom has learned a lot about it.

"Your body has proteins that hold it together and those proteins in my daughter are weak or not there," Becky said.

It effects Kylye's skeletal system, muscular system, her heart, her lungs and her blood vessels. It's changed her life.

"I went to being in gymnastics and soccer and I loved it, to where I can hardly jump rope in PE," says Kylye.

Any physical activity could kill Kylye because marfan's causes her to have an enlarged aorta, which can lead to an aneurysm, even at the age of 10.

"It was very hard for me to imagine my kids had something wrong with them like this and it has become an everyday saying marfan syndrome around this house."

Becky tries to keep life normal for Kylye, making her do chores and go to school just like all kids. Kylye hasn't let her disease bring her down.

"You don't know how much you can do until you try. I may get better I may get worse, no telling. I hope I get better," she says.

With medication, Kylye will most likely live a normal and healthy life. But she and her mom want others to know, if your child has any symptoms is very tall, has a sunken chest, a high palette, or is double jointed, go to a doctor. It could mean the difference between life and death.

"Everyone knows what down syndrome is, everyone knows what cerebral palsy is, those are genetic disorders let's make this one just as common to people, " says Becky. And together Becky and Kylye will do just that.

Powered by Frankly