Toddler beats odds of disease just by living past 2

Kyle Gundy, 2, who has Spinal Muscular Atrophy and cannot eat, walk or talk, has beaten the odds just by staying alive.

By NORA FROESCHLE World Staff Writer
8/5/2007

SAND SPRINGS -- Kyle Gundy can wiggle his fingers and toes a bit, he has a sweet smile, and just being alive at the age of 2 years, 9 months, is against all the odds he was given soon after his birth.

When Kyle was 6 weeks old, his mother, Jana Gundy, thought he had a tummy ache and took him to his pediatrician.

Of all the things she thought they might find, a diagnosis of Spinal Muscular Atrophy, or SMA, was not among them.

She was referred to a neurologist, who told her the baby would not survive more than two years and that she and her husband, Michael, should just take him home and love him. And wait for him to die.

"It was just despair," Jana said. "I didn't think death. I couldn't even repeat to my family what he had."

Michael said the couple was given almost no hope. "There's no cure or medicine. They just have no idea," he said.

Spinal Muscular Atrophy is a motor neuron disease affecting muscles throughout the body, but especially those closest to the spine, according to Families of Spinal Muscular Atrophy (www.tulsaworld.com/fsma).

The Gundys

said they have found many friends through the group's Web site.

In half the SMA cases diagnosed, death occurs before the age of 2, and about one in 6,000 babies is born with the genetic disorder.

August has been declared nationally as Spinal Muscular Atrophy Awareness Month.

In 1990, Gov. Brad Henry and his wife, Kim, lost their daughter Lindsay to SMA when she was 7 months old. Henry said in 2004 that doctors told him and his wife there was nothing they could do to help her.

It is a common story to Dr. John R. Bach, who is on the faculty at the University of Medicine and Dentistry of New Jersey. Bach has written and lectured extensively about the disease, which he believes is being mistreated.

The Gundys found Bach's work on the Internet and credit him with giving them the information they needed to get treatment for Kyle -- treatment they believe has prolonged his life.

"Most doctors think if you can't breathe or you can't talk, you have to have a tracheotomy tube or die, but all you have to do is apply pressure to the body directly to the airway that takes the place of the breathing and coughing muscles," Bach said in a telephone interview.

Bach said most children with SMA are allowed to die without much intervention or treatment that includes the use of a machine to assist with coughing and breathing.

Kyle has three machines that help keep him alive: one to assist coughing, one for breathing and one with a suctioning wand used to suction off any saliva that pools in or around his mouth.

The disorder does not affect cognition and intellect, so Kyle is processing information and taking in the world. "These kids are overly intelligent and happy," Jana said.

The fact that Kyle is not in any pain is the saving grace for his family, she said.

Kyle enjoys watching movies in the den with his nurse, Nikki Moore, who stays from 8 a.m. to 4 p.m. daily during the week. She is there because Kyle could stop breathing and need emergency treatment at any time, and Jana has son Tyler to care for, as well.

Tyler, 4, said he helps take care of Kyle, too.

"I get his swabbers out and take care him and give him hug and kiss," Tyler said.

Kyle can get around with a specially designed wheelchair that is so sensitive, he can pilot it using just one finger.

Jana said one time while the family was outside, Kyle wanted to go somewhere so much that he drove his wheelchair over to the family's van and parked by the door.

The Gundys hope for a cure but know they cannot pin their hopes on such a thing.

"I couldn't imagine living in the despair of wanting a cure all the time," Michael said.

The Gundys started a foundation to support families with children who have SMA, and they're organizing a benefit.

Jana said she wants to use the money to support research, help with daily living needs of families and buy specially designed, expensive toys and computer games.

She said without God and prayer, she would have been "locked" up a long time ago, but now, she and Michael have a certain sense of peace.

"The things you used to worry about don't matter. I think we have the better end of the deal versus parents who don't know their kid's going to die tomorrow. Did they say things they didn't mean? Did they tell them they loved them?" Jana said.

For more information about the Gundy family’s Sept. 22 fundraiser, Walk Away SMA, see Kyle’s Web site at www.tulsaworld.com/kyle