Local family raises awareness of rare disease
There are a number of rare disorders with almost unpronounceable names and symptoms that are difficult to diagnose.
One Picayune woman is campaigning to bring awareness to Histiocytosis, the disorder that claimed the life of her two-year-old grandson.
Cade Belsome was a healthy little boy and weighed a hefty 10-pounds at birth, the boy’s grandmother Tonya Cialona said. One of Cade’s favorite things to do was play with his sister Brianna.
In October of 2009, Cialona received a text message from her daughter Brandi who told her that Cade’s skin was turning yellow.
“When we took him to the hospital doctors told us that he was in liver failure and needed a transplant,” Cialona said.
After that, Cade was transferred to Children’s Hospital in New Orleans where doctors performed a liver biopsy and determined that the toddler was not a candidate for transplant.
“Doctors said that it wasn’t his liver that was the problem, but they needed to find out what was damaging his liver,” Cialona said. “He was referred to Tulane Hospital in February of 2010 where he was diagnosed in with Histiocytosis.”
Cade was airlifted to the Cincinnati Medical Center, Cialona said, which is a top-notch hospital known for treating these disorders.
“Cade was too far gone when he got to Cincinnati and he passed away three days later,” Cialona said.
According to www.histio.org, HLH is a rare disorder of the immune system that primarily affects infants and children. In a population study published in Sweden, it was estimated that HLH occurs in 1 in every 50,000 births.
HLH is characterized by the over-production and activation of normal infection-fighting cells called histiocytes and T cells.
The symptoms of HLH include persistent fever, abnormal blood tests showing low red blood cells, low platelets or low neutrophils, other blood abnormalities, enlarged spleen, skin rash and enlarged lymph nodes.
HLH can be acquired (secondary) or inherited (primary), the website states, however, the true cause of this disease is not known. Patients with an underlying genetic defect can only be cured when the defective immune system is replaced by a healthy one with a hematopoietic stem cell transplant. Secondary HLH can generally be cured by treating the underlying disease and in some cases through additional immunosuppressive and immunomodulation therapy.
Cialona said Cade was born with the genetic defect. His sister was tested to rule out HLH and her results were negative.
Since Cade’s death, Cialona has made efforts to raise public awareness of this and other rare disorders.
“It’s a very aggressive disease,” Cialona said. “The month before he died, he was dancing at a wedding. We never dreamed it would be this serious.”
Cade would have been in first grade this year and to honor his memory, Cialona and her fitness group collected school supplies for needy first graders at the beginning of the school year. She has other ideas for projects including a coat drive.
“Parents need to know the symptoms of this disease and other rare diseases,” Cialona said. “When your child is sick, you think ‘I’ll just take them to the doctor, get a prescription and everything will be fine,’ but with this disease early diagnosis is key.”
The Picayune City Council proclaimed September and October as Histocytosis Awareness month at Tuesday’s meeting. The month of September is National Rare Disease month, Cialona said.
Learn more about histocytosis at www.histio.org and the National Organization for Rare Disorders website www.rarediseases.org.
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