A Gainesville couple is struggling to find help for their 3-year-old son, who is suffering from a rare and potentially debilitating blood disease.
“I feel like the last two years have been a blur,” said the child’s mother, Heather Charlton. “I’ve been doing everything just to get somebody to help us.”
The ordeal began when Heather’s son, David, was 8 months old and the young family was living in Hawaii, where Heather’s husband, Dustin, was serving in the Navy.
A strange rash formed on David’s hip. He also was having high fevers and some diarrhea.
Heather took her son to the doctor, who prescribed a cream for a suspected insect bite. The doctor also said that David was probably teething.
After a couple of weeks, the rash spread. This time, the doctor speculated the cause might be a bacterial infection.
A month later, the rash was even bigger. By this time, the couple demanded answers. A biopsy revealed that David may have Langerhans cell histiocytosis, prompting the couple to do some Internet research.
“Everything we read was that most kids have multiple organ involvement and they die,” Heather said. “It scared us to death because we didn’t really know what was wrong with him.”
Doctors eventually confirmed that diagnosis.
According to the Histiocytosis Association of America’s website, histiocytosis is caused by an excess of white blood cells called histiocytes.
The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes and possibly the central nervous system.
In some cases, the disease can be life-threatening.
It is estimated that histiocytosis affects 1 in 200,000 children born each year in the United States.
The Charltons, married since 2005 and sweethearts since their days at Gainesville High School, were facing the biggest challenge of their lives.
They took David to an oncologist, who first thought the disease was only affecting David’s skin and prescribed creams.
David’s symptoms were unrelenting. A month passed and he still suffered from high fevers and diarrhea.
“We couldn’t get him to eat or drink anything,” Heather said. “He started to lose weight.”
If anything, David’s condition got worse.
“We (moved back) to Georgia this year and he was the sickest that he has been,” Heather said.
The Charltons, who also have a 2-year-old daughter, Taylor-Grace, got in touch with a specialist, Dr. Kenneth McClain, at Texas Children’s Hospital in Houston.
“He believed David had (gastrointestinal) tract involvement and he wanted us to take him to Texas,” Heather said.
The doctor also warned, “If you don’t treat (David) soon, (the disease) could spread to other vital organs.”
The Charltons have scheduled an Oct. 11 appointment with the doctor.
“We want to get all the tests he can get done, so that when we come back and go to (Children’s Healthcare of Atlanta at) Egleston, he can collaborate a little better with the oncologist here,” Dustin said.
To help raise money for the family, the Vietnam Veterans of America chapter in Gainesville is sponsoring an Oct. 2 bake sale at the Walmart Supercenter on Shallowford Road in Gainesville, the couple said.
VVA officials couldn’t be reached for comment.
With Dustin’s new job and insurance, as well as mounting medical bills, life has been tough for the Charltons.
And they’re facing the prospect of David undergoing chemotherapy for a year. Plus, they’ve been told the disease may be affecting the boy’s bone marrow.
“We’re trying to educate people more than ask for a handout,” said Dustin, who works for the Hall County Sheriff’s Office, “(to say) that this thing is out there ... and just be aware it is one of those crazy things that nobody knows about.”