By KEVIN CHIRI
Slidell news bureau
SLIDELL – It didn’t take long for 24-year-old Brandyn Coffey to understand the depth of a father-son bond.
When he became a dad on Sept. 12, 2016, seeing his son Braxtyn come into the world, he immediately felt the power of love a dad has for his little boy.
“It’s his little buddy,” Kaitlyn Godwin said, looking at Brandyn holding 9-month-old Braxtyn on his lap. “This has been really hard on him.”
When Kaitlyn and Brandyn became parents last year it appeared they were blessed with a son who was as healthy as every mom and dad hopes for.
But four months later their world was turned upside down when Braxtyn woke up early one morning with a bad cough, a 104 degree fever and struggling to breathe.
That began a two-month ordeal of doctor visits and testing before the diagnosis of a rare immune system disease was determined. Chronic Granulomatous Disease, otherwise known as CGD, is found in only one out of 200,000 people and causes a defect in the immune system, making it easy for a child to get infections and extremely difficult to get rid of them.
Without treatment a child will usually not live beyond their first decade of life, but research has led doctors to find that a bone marrow transplant can provide a cure for CGD. That is what Brandyn and Kaitlyn are hoping to get for their son and they are hoping more people will be tested to see if they are a match—whether it helps their son or someone else.
“This certainly makes us understand the importance of people being tested to see if they are a match as a donor,” Kaitlyn said. “We already found out we aren’t a match for him so now we have to just wait.”
While there is an international database of millions of people for many different things, the exact match for Braxtyn’s bone marrow need has not surfaced in nearly two months.
Brandyn and Kaitlyn first began dating over two years ago after meeting at a local car dealership where both of them worked. When Kaitlyn became pregnant things seemed very normal with no serious complications.
“When Braxtyn came home he seemed very healthy,” she said. “But then it all started that morning when he was coughing so hard that he could barely breathe.”
From the initial visit to the emergency room to several followup doctor visits the main thing that concerned physicians was the continual high fever, and blood work that showed his liver enzymes were very high.
“His fever would go down so we thought he was getting better, but then it kept coming back,” she added. “Our pediatrician didn’t have the answer about what was wrong even though we were getting blood work done every two days.”
Weeks went by with the problem coming and going, at times getting admitted to the hospital, but always going home when the fever subsided. But through it all the liver enzymes continued to be high. Normal counts should be in the 20 to 60 range, Brandyn said, but Braxtyn was seeing counts near 900.
“They began to talk about a possible liver transplant since anything over 1,000 is that serious,” Brandyn said. “It was so frustrating. They just kept telling us they wished they had a better answer about the problem, but no one did.”
Finally in early March he was sent to an immunologist who looked at the symptoms and the blood work, leading to an immediate comment of “I believe he has CGD. He has all the symptoms.”
The disease usually affects boys and is an inherited condition that involves a faulty gene. While antibiotics has been the approach to treat the infections that are so easy to catch, it still can easily lead to pneumonia.
“If you look at Braxtyn you would never know he was sick,” Kaitlyn said. But that’s because he is on medication. The problems are that he really can’t go outside, he can’t play in the dirt at all, he has to stay away from waterways or outside dirt and he can’t be anywhere near sick people because he catches infections so easily.”
As scary as the disease is for their son, the couple said they were encouraged recently when they were at Children’s Hospital and met a mother with a 2-year-old who had received a bone marrow transplant.
“She helped reassure us so much,” Brandyn said. “We know it’s a rare disease, but her son is in good shape now. We are trying to be positive, but it’s hard waiting for a bone marrow match.
“I’m thankful for Kaitlyn because she has been so strong through this,” Brandyn said. “I try to be positive, but some days I cry about it since I know how serious this is.”
Kaitlyn said that when she first heard the diagnosis it was “scary to hear, especially when they said he needs a bone marrow transplant. Brandyn and I are getting through this with good family support and trying to be strong for each other,” she added.
Anyone willing to be tested to see if they are a bone marrow match can go online to bethematch.org and they will be sent a swab kit that can be used at home and mailed in. The test only takes minutes, then it takes up to two months for results.