September 9, 2015
Ava starts a new school year!!

August 8, 2015
Ava celebrates her 7th birthday!

May 11, 2015  A second First Day of School
Ava returns to school at St Peter's RC in Lewiston.

October 23, 2014   AVA IS BACK HOME IN LEWISTON NY!!!

How her journey began.........
Ava Pannozzo, an active and energetic 4 year old from upstate New York, began to experience high fevers in early Spring 2013 and was diagnosed with the rare immune disease, Familial HLH soon after in May 2013. Treatment of HLH requires intensive rounds of chemotherapy, with the only cure being a bone marrow transplant, which she received in August of 2013 at Cincinnati Children's Hospital.

Due to the nature of the transplant procedure and necessary care, Ava and her parents, Ida and Chris, traveled to Cincinnati where they will remain for at least six months.  During that time Ava will be a patient at Cincinnati Children's Hospital for a minimum of three months fighting the disease.  Support from the community has been overwhelming and Ava's family and friends organized a benefit in her honor which was held August 25th 2013.
About HLH
Hemophagocytic Lymphohistiocytosis (HLH) is a rare genetic disorder that results in the body's immune system going into hyper-drive, attacking other blood cells and organs.  Familial HLH is particularly rare, affecting ~1 in every 50,000 births.

HLH is not cancer or Leukemia but does require chemotherapy and a bone marrow transplant for treatment, to interrupt the immune response and replace "rogue" cells.

Primary HLH, also known as familial hemophagocytic lymphohistiocytosis (FHL) or familial erythrophagocytic lymphohistiocytosis is a heterogeneous autosomal recessive disorder found to be more prevalent with parental consanguinity. Secondary hemophagocytic lymphohistiocytosis (i.e., acquired hemophagocytic lymphohistiocytosis) occurs after strong immunologic activation, such as that which can occur with systemic infection, immunodeficiency, or underlying malignancy. Both forms are characterized by the overwhelming activation of normal T lymphocytes and macrophages, invariably leading to clinical and hematologic alterations and death in the absence of treatment.
"A Benefit For Ava" was held Sunday (8/25/13)
Thank you to everyone for making it a huge success!
More information on HLH
Learn More