Tuesday, May 1, 2007 7:01 PM EDT
LOUISVILLE — From a “bubble boy” to a medical wonder, Freddie Bevins of Vanceburg, has been making medical history his entire life.
At 18 months of age, Bevins was diagnosed with hyper IgM syndrome and was later diagnosed with severe chronic neutropenia. The combination of the two diagnoses is one of only three in the country, said Bevins’ mother, Shirley.
Bevins’ condition prevents his body from making the cells it needs to fight off dangerous infections and injuries. Doctors have ordered him to stay away from people who are ill, large crowds and avoid any sort of injury. Even the most minor injuries could become life-threatening to Freddie. As a result, Freddie has been in and out of hospitals his entire life, submitting his body to infusions, shots and much poking and prodding.
At age 21, the Lewis County native is still fighting and defying the odds.
“He’s doing really well now,” said Shirley of her son.
Freddie’s improvement comes as the result of an experimental adult umbilical cord blood transplant, the first one of its kind in Kentucky, said Freddie.
Many factors led to Freddie receiving the rare transplant.
Three years ago, the bone marrow transplant team at the University of Louisville, the hospital where Bevins is currently treated, put Bevins on the National Bone Marrow Register in hopes he would find a match.
“No perfect matches were ever found,” said Shirley
On Nov. 11, 2006, Freddie was taken from his home in Vanceburg to Meadowview Regional Medical Center to be treated by Dr. Michael Coleman and Dr. Casey Keeton for low blood counts, like he had time and time again. But this time, his counts would not rise.
Bevins was taken to the University of Louisville Hospital, where tests determined that his bone marrow had quit working altogether. Freddie’s prognosis did not look good, but something happened that changed everything.
“Like a miracle had happened,” two umbilical cord matches appeared on a registry, said Shirley.
Freddie was given a choice to try an experimental transplant, with all its risks, or give up the fight.
Freddie chose to continue fighting.
“I don’t have a choice,” he said, “I’ve got to.”
Doctors sent for both cords, noting more than one may needed for the transplant. Sure enough, Freddie took both.
Freddie was put through five days of chemotherapy and full-body radiation prior to the transplant and on Valentine’s Day this year, Freddie became the first adult recipient of a cord blood transplant in Kentucky, he said.
“It’s working,” said Freddie’s jubilant mother.
On April 3, Freddie’s transplant began making “baby cells,” said his mother.
“It takes two years for the new cells to become full grown adult cells that will protect his body the way it should. So, he will be under the doctors care for at least that long,” she said.
However, Shirley and Freddie plan to move back to Vanceburg as soon as possible, when doctors only wish to see him once per week.
This week, Bevins has only needed to travel to the University of Louisville Hospital twice, so Shirley says the outlook is good that they will be able to return home soon.
Luckily, Freddie and his mother have been able to visit their home in Vanceburg over the course of the past three weekends. Three weeks ago was the first time Freddie had been home since his health scare in the fall.
Right now, Shirley and Freddie live in an apartment in Fairdale, an area located close to Louisville. Freddie’s father, Fred, stays in Vanceburg most of the time to tend the farm, but visits frequently.
Freddie says he can’t wait to move back to Lewis County. He hopes to open his own horse stables and trails one day, or perhaps go into the roofing business.
But for now, “he still has a lot of limitations,” Shirley says.
“We just hope and pray that he doesn’t develop graft versus host or host versus graft disease,” said his concerned mother, “that could happen months down the road.”
Despite the health threats, the family remains optimistic.
“Everything has gone really well so far. The doctors are satisfied at the way he is doing,” Shirley said.
Freddie and his family say they are eternally thankful for all the cards, visits, prayers and donations they have received. They also wished to thank the doctors and nurses at MRMC, the University of Louisville Hospital and James Brown Cancer Center for Freddie’s care.
“Without them, I would hate to think what Freddie would have done or what might have happened,” said Shirley.
Shirley said Freddie’s condition has taught the family that people, even strangers, really do care. They have been touched by humanity’s kindness.
“Thank you all and God bless you all,” said Shirley.
Now, Freddie is even becoming a medical celebrity. Not only have local papers covered Freddie’s progress, but Louisville’s Courier Journal and the Outlook have picked up on the story, as well as TV news stations. A book about Freddie’s life is in the works and CNN has even contacted the family about filming a segment.
Shirley says Freddie hopes that even if he does not “make it,” his life and experiences will help others.
For updates about Freddie and his condition, visit http://www.bevinstransplantfund.com.
The family also continues to ask for financial support, since medical expenses are many. Donations may be sent to The Bevins Transplant Fund, in care of Citizen’s Deposit Bank and Trust, 400 Second Street, Vanceburg, Ky. 41179.
Contact Carrie Carlson at 606-564-9091, ext. 272.