According to medical statistics, approximately one in every 2 million newborn children have Junctional Epidermolysis Bullosa (JEB) – a rare genetic connective tissue disorder that leaves one susceptible to painful blisters and infection.
A local baby just so happened to be the unlucky one in that 2 million equation.
He and his family’s fight have united and rallied together our community, which is using the power of prayer and philanthropy to push them through the struggle.
Baby Cole Guilbeau was born on December 10, 2014 to local parents Chad and Chantece Guilbeau. Shortly after birth, on Feb. 16, the infant was given his JEB diagnosis. He started showing symptoms just a few days after being born.
As news of the sick baby became known locally, a grassroots community-wide social media campaign got started, and Cole’s Cure was born.
Now plastered on wristbands, t-shirts, hashtags and just about anything else imaginable, the family looks back with a bright smile knowing that their baby boy has inspired so much good from so many others.
The Cole’s Cure Softball Tournament was held two weekends ago. It attracted 36 total teams and raised almost $40,000 for the cause.
The family also said it wanted to thank everyone for a Pedro Tournament that was held recently in honor of Cole – an event that drew many together in honor of the baby’s fight.
“The Guilbeau family has truly been blessed to have the support of such wonderful family, friends and community during this time in our lives,” Cole’s big sister and South Lafourche student Caroline said. “Without the help of all these people, it would be impossible to have the strength to go through this situation alone. We are so blessed for our supporters.”
Right now, baby Cole is in Minnesota where he awaits a bone marrow transplant at the University of Minnesota Masonic Children’s Hospital. Caroline said her brother will be in the hospital for at least 30 days after the transplant, and the family will have to stay in Minneapolis until mid-September as Cole undergoes follow-ups with his doctors. He was scheduled to begin chemo June 10. His bone marrow procedure is booked for June 16.
Caroline said that so far, Cole’s condition has been tough, but also manageable, compared to the struggles that others face with the same ailment.
JEB is a diagnosis given when an infant is missing a protein type necessary for bonding one’s skin together.
When that protein isn’t present, blisters spread on the body and soft tissues of one’s mouth and throat.
“Cole endures constant pain from the blistering all over his body,” Caroline said. “My parents change his bandages daily to protect his wounds and prevent infections.”
While the Guilbeau’s fight to protect their baby thousands of miles from home, the power of prayer can be heard all the way in Louisiana.
As Cole’s story became common knowledge among folks ‘down the Bayou,’ Caroline and Janee Lombas decided to do something to help. Together, the two brainstormed and came up with the idea of a softball tournament, which would rally support for the precious baby and raise money to go toward medical expenses for the family.
As the idea got off the ground, it quickly developed legs and became something well-known locally. Caroline said together with countless volunteers from the community, the team sold Cole’s Cure shirts, bracelets and car bumper stickers to raise money to buy supplies for the tournament.
But even as the Cole’s Cure items flew off the shelves, no one involved knew exactly how big the event would be.
“We never imagined we’d have the amazing turn-out that we did,” Caroline said.
When it was all said and done, 36 total teams competed, almost $40,000 was raised and the tournament was a grand slam home run. It featured a live band, an auction and, of course, the games on the field.
“It was amazing,” Lombas said. “Our community is one of a kind, and it should be recognized for helping us to have such a successful tournament.”
For Caroline and the rest of the Guilbeau family, the turnout causes goosebumps – a warm feeling of pride that can’t be replaced.
Little Cole’s six months on earth have been hard on the family, yes. But his cause and fight have brought out the good in so many – a warm spot for everyone involved.
“Please continue to keep Cole in your prayers,” Caroline Guilbeau said. “Lots of thanks and love from my family, Chad, Chantece, myself and my brothers Cyrus and, of course, Cole.”
Posted on Fri, June 12, 2015
by Gazette Staff Reports