A Lewiston 4-year-old faces a battle with a rare blood disease - The Buffalo News

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A Lewiston 4-year-old faces a battle with a rare blood disease

NIAGARA FALLS – When 4-year-old Ava Pannozzo, of Lewiston, began running a fever just after Easter this year, Ida Maria Pannozzo assumed that her daughter had contracted a typical childhood virus.

As the fevers continued, however, the family’s pediatrician sent them to Women & Children’s Hospital in Buffalo for further testing.

“When the doctor told me to report to Children’s, I packed for three days, because I had a feeling we weren’t coming home for a little while,” Ida Pannozzo recalls.

After 12 days of treatment and tests, doctors determined that Ava was battling familial HLH, or Hemophagocytic Lymphohistiocytosis – a rare genetic dysfunction of the immune system that occurs in approximately 1 per 50,000 births.

The youngster has been undergoing chemotherapy and other treatments since the beginning of May to keep the disorder at bay. “Ava has responded to the chemotherapy very well and is feeling much better, but this is only a temporary solution, and we have a long road ahead,” said her father, Christopher Pannozzo.

The family is in the process of transferring Ava’s care to Cincinnati Children’s Hospital Medical Center, a world leader in HLH research. There, Ava will undergo a bone marrow transplant to replace her malfunctioning immune system with that of a normal and healthy individual.

The bone marrow transplant process will require Ava to spend at least three months in the hospital. The family expects mother and daughter to be in Cincinnati for a minimum of six months in order to complete treatment.

“Ava’s doctors have indicated that preliminary searches revealed a number of potential donor matches for her,” explains Ida Pannozzo. “We are hopefully going to be very lucky in that way.”

The family realizes that the battle against HLH is a long and costly one. Her family and friends are holding “A Benefit for Ava” to help defray medical costs that the family will incur when they travel to Cincinnati for further treatment.

The benefit will take place from noon to 5 p.m. today in Antonio’s Banquet and Conference Center, 7704 Niagara Falls Blvd., from noon to 5 p.m. A donation of $25 for adults will include food and beverages; children under 16 are also welcome at no charge.

There will also be a basket raffle; silent auction including autographed sports memorabilia, hotel packages, youth bicycles, an iPad, and more; and a 50/50 raffle.

Monetary donations to “A Benefit for Ava” will also be accepted. To purchase tickets or make a donation, please call: Giulio or Beth Colangelo at 299-1095, Jackie or Anthony Pannozzo at 297-5310, or Gina Pannozzo at 807-6798. You can also get additional information or make donations online at www.abenefitforava.com or by emailing abenefitforava@outlook.com.

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