Fund-raiser to benefit Houlton girl with rare disease

  HOULTON, Maine — It is every parent’s worst nightmare. Their child develops what first seems like a simple malady, only to find out it is something much worse.
Such is the case for Sue Bates and Jay Gould of Houlton. Their 11-month-old daughter Chloe was diagnosed with Langerhan’s cell histiocytosis on May 11 at the age of 9 months.
On Friday, Aug. 13, a spaghetti fund-raising supper will be held from 4-6 p.m. at the Houlton Wesleyan Church for the family along with a silent auction dessert. For information on the supper, contact Jan Neureuther at jneureuther@ghca.com.
Almost from the day she was born, Sue had suspicions that something was not quite right with Chloe.
“I thought she had way too much mucus as a baby,” Sue said. “And she slept all the time. I had never seen a baby want to sleep 19 hours a day. She sleeps two or three hours at a time, wakes for an hour or so and then is ready to sleep again.”
Once she was diagnosed and treatments began, Chloe settled into a more regular routine and has become more active. She still sleeps more than most children, but it’s not as extreme, Sue said.
“She’s probably had this condition since birth,” Sue added. “As she got older, it seemed like all she wanted to do was sleep. She also didn’t move around much, but we thought maybe she was just a late bloomer.”
In February, Chloe developed an ear infection that did not respond to medication. She was hospitalized with a fever that lasted for seven weeks straight.
“Her temperature would not go away, even with numerous types of antibiotics,” Sue said. “She had high white blood cell counts, so they thought it was some kind of infection. We were down in Bangor and they told us if it did not clear up in a week to bring her back.”
When things did not clear up, Chloe’s family began making numerous trips to Bangor for testing, which included both spinal and bone marrow taps. An abdominal scan was performed, which revealed several bone lesions in her hips, spine and upper legs. It was also discovered that she had small lesions on her skull.
“We were told they were not sure what we were dealing with, whether it was a bone infection or tumors,” Sue said.
After several biopsies were performed over several weeks, the family was finally given a diagnosis — Langerhan’s cell histiocytosis.
“We were told Chloe would need a year’s worth of chemotherapy treatments and there would be a lot of ups and downs,” Sue said. “We were also told that with histiocytosis it could move within the body and affect the organs.  We had never heard of Langerhan’s cell histiocytosis, but we would soon learn more than we really wanted to know.”
According to www.histio.org, “Histiocytosis is a rare blood disease that 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/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and debilitating. In some cases, the disease can be life threatening.
“Histiocytosis is not a cancer. In some ways, histiocytosis is similar to cancer and is primarily treated by oncologists with chemotherapy and/or steroids. Unlike cancer, histiocytosis sometimes goes into remission without treatment. The vast majority of people diagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages.
It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is considered an ‘orphan disease,’ meaning it strikes too few people to generate government-supported research.”
Chloe began chemotherapy on May 24 in Bangor, and the Bates are optimistic for their daughter.
“This is something she will probably have to live with her whole life,” Sue said. “The type that she has can affect her bones and organs. It can also be a fatal condition. Right now, her prognosis is good.”
Chloe has three siblings, Brock, 13; Alyssa, 11; and Noah, 9, Gould.
“We’ve received a tremendous amount of support from the community,” Sue said.
For more information on Chloe or to donate to her cause, visit www.caringbridge.org/visit/chloebates.