Here is Avery's story: Avery was diagnosed with neutropenia at birth after experiencing a re-hospitalization for jaundice. After a year of unclear reasoning as to why Avery had neutropenia, the decision was made to test Averys immune system. To our surprise, we found out that Avery had very low levels of antibodies that his body is expected to make. Avery was started on daily antibiotics and close monitoring of his immune system. At the age of 2 after repeated infections and lab work confirming Avery had lost a few of his vaccines he was given as an infant, Avery underwent a vaccine challenge in which he failed. In addition to falling immunoglobulin levels, January 28th 2020 Avery started immunoglobulin replacement of Hizentra at the Children's Hospital of Philadelphia. Since then, he's undergone a bone marrow biopsy. It is felt that Averys own immune system is attacking and killing his white blood cells, particularly the neutrophils. It was also found that Avery has a spleen abnormality that is also being monitored with serial scans.
Avery is a happy, smiley, joyous, energetic 4 year old who exhibits extreme strength, perseverance, and fearlessness. We are thankful for where he is today, because we remember where he once was. Today our team will celebrate Avery and walk/run in honor of him. We love you Avery.