When 4-year-old Ava Pannozzo of Lewiston began running a fever just after Easter, Ida Maria (Colangelo) Pannozzo assumed her daughter had contracted a typical childhood virus. As the fevers continued, however, the family's pediatrician sent them to Women and Children's Hospital 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 recalled.
After 12 days of treatment and tests, doctors determined Ava was battling familial HLH (hemophagocytic lymphohistiocytosis) - a rare genetic dysfunction of the immune system that occurs in approximately 1 in 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," noted 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 life-saving 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 Ida and Ava to be in Cincinnati for a minimum of six months in order to complete treatment.
Despite the treatments to come, the family is optimistic, "Ava's doctors have indicated that preliminary searches revealed a number of potential donor matches for her," Ida said. "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. In honor of Ava, her family and friends are holding "A Benefit for Ava." This fundraiser is to help defray medical costs family members will incur when they travel to Cincinnati for further treatment.
Please help the families by joining in the fight against HLH. The benefit will take place on from noon until 5 p.m. on Sunday, Aug. 25, at Antonio's Restaurant, Banquet and Conference Center, 7704 Niagara Falls Blvd., Niagara Falls. A donation of $25 for adults will include food and beverages; children under 16 are also welcome at no charge. There will be a basket raffle; a silent auction with 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, contact Giulio or Beth Colangelo at 716-299-1095; Jackie or Anthony Pannozzo at 716-297-5310; or Gina Pannozzo at 716-807-6798. For more information, or make donations online, visit abenefitforava.com or email [email protected].
More information about HLH can be found at www.histio.org/hemophagocyticsyndromes. Information about the national bone marrow donor program, BetheMatch.org can be found at: http://bethematch.org/Home.aspx.