Extraordinary outpouring for baby with rare condition

Extraordinary outpouring for baby with rare condition

By DEBRA SKODACK
The Kansas City Star

Daniel and Jennifer Bayless always knew there were great things about living in a small town such as Bolivar, Mo.

Everyone knows you at the grocery. They wave when they see your truck drive through town. They pack the high school stadium on autumn Friday nights to root on the football team.

“And they take care of their own,” Daniel Bayless said Thursday.

And for this young couple, there is no more important time to care than now.

The Baylesses’ 7-month-old son, Granton Lee, is in Children Mercy’s Hospital’s Pediatric Intensive Care Unit. He has a rare condition — severe combined immunodeficiency. His body isn’t producing enough of the T-cells needed to fight off disease. The cure is either a bone-marrow or a cord-blood transplant.

On Monday, three towns with ties to the Bayless family — Bolivar; Dearing, Kan.; and Yukon, Okla. — held bone-marrow registry drives in hopes of providing a match for Granton or some of the other estimated 6,000 people across the country awaiting transplants.

Across the country, 12,000 such drives are held each year, with an average of from 30 to 40 people turning out to be registered.

Monday’s drives for Granton registered 1,792 people.

“The number of people being recruited at Granton’s drives makes them among the largest that we’ve seen as an organization,” said Steve Lovelace, director of recruitment and community development for the National Marrow Donor Program in Minneapolis.

“These recruitment numbers show an extraordinary outpouring of community support, not only for the Bayless family, but also for thousands of searching patients across the country.”

Donnie Bigby is registering himself Tuesday in Miami, Okla., where he works with one of Daniel Bayless’ sisters at Northeastern Oklahoma A&M College.

“I am scared to death,” Bigby said.

He has no fondness for the needles that would come into play if his bone marrow were a match.

“But if there is any chance we can help that little feller, it’s time to suck up the pain.”

At a registry drive, the inside of a person’s cheek is swabbed so the tissue can be typed. People identified as potential donors have additional blood tests to confirm a match.

Bone marrow is donated two ways: 80 percent is given through a blood donation in which marrow-producing blood cells are taken, and 20 percent is given through a 30-minute outpatient surgery that extracts bone marrow from the rear pelvic area. Either procedure will leave people sore for a few days.

Now is a particularly good time to register: Through May 19, the National Marrow Donor Program is waiving the $52 fee that potential donors pay to cover the cost of tissue typing.

The community outpouring for Granton didn’t surprise his father, who has taught English at Bolivar High School for eight years.

“We never asked for help, but Bolivar is the kind of a town that they are there if you need help,” he said.

Daniel Bayless moved to Bolivar to finish college at Southwest Baptist University. He stayed on to teach and coach football, wrestling and track. And he fell in love with the school district athletic director’s daughter, Jennifer, an elementary school art teacher. They married in 2003.

Granton, their first child, was born Oct. 2 at 9 pounds, 2 ounces. The nurses called him “Brutus.”

At about three months, Granton began to lose weight, something his parents initially thought was baby fat. But then Granton developed a persistent cough that doctors couldn’t explain.

In March, relatives noticed how much weight Granton had lost since the last time they had seen him, sending Daniel and Jennifer Bayless into emergency mode.

The child was admitted March 27 to Children’s Mercy.

Granton is battling pneumonia and respiratory syncytial virus (RSV). Daniel Bayless said his son would need to get stronger before a bone-marrow transplant was possible.

Meantime, family, friends and strangers are trying to make it possible.

People also are trying to help the family financially. Jennifer Bayless is a stay-at-home mom, and Daniel Bayless is on sick leave through the school year. They are staying at the Ronald McDonald House in Kansas City.

One of Daniel’s Bayless’ sisters was approached in a Coffeyville, Kan., grocery by someone selling a coupon book as a fundraiser for a family in need. It was for her brother’s family, and she bought one without revealing her connection.

A friend is holding a garage sale today and Saturday in Olathe. Another friend is selling 300 T-shirts with Granton’s photo and the phrase “Don’t Worry, Pray,” something Daniel Bayless was told by a consoling relative of another patient at Children’s Mercy.

Daniel Bayless returned Monday to Bolivar because although he had been tested as a bone-marrow donor for Granton, he hadn’t registered with the national program.

“I never expected so many people to come out and get their cheeks swabbed based on the fact that my son is in the hospital,” he said. “It is humbling that so many people care about my family.

“The whole thing has made me realize all the great people in our country. They reach out with no ulterior motive to do something good.”


On the Web
To see a video describing the marrow donation process, go to KansasCity.com.


Registration drives
The National Marrow Donor Program is in the middle of its annual “Thanks Mom” program. Through May 19, the program is waiving the $52 fee that potential donors pay to cover the cost of tissue typing.

Kansas City “Thanks Mom” drives:

•11 a.m. to 2 p.m. Saturday at Brush Creek Community Center, 3801 Emanuel Cleaver II Blvd.

•10 a.m. to 2 p.m. Monday at Children’s Mercy Hospital, 2401 Gillham Road.

•2 to 6 p.m. Thursday at St. Charles Borromeo Parish, 900 N.E. Shady Lane Drive in the Northland.

•9 a.m. to noon May 18 at St. Therese School, 7277 N.W. Missouri 9 in the Northland.

•8:30 to 11 a.m. May 18 at Temple B’nai Jehudah, 12320 Nall Ave., Overland Park.

•9 a.m. to 1 p.m. May 18 at Christ Church, 5500 W. 91st St. Overland Park.

•Noon to 8 p.m. May 19 at Argosy Casino, 777 Argosy Parkway, Riverside.

You can also register online by going to www.marrow.org. The program will mail a cheek-swabbing kit.

linkback url: http://www.kansascity.com/105/story/612221.html

Advertisements

Comments are closed.

%d bloggers like this: