At two and a half years old, Finn has faced more challenges and been hospitalized more times than most adults. And his battle is ongoing.

From birth, Finn has struggled with illnesses and developmental delays, including countless viral rashes, fevers over 106, chicken pox, shingles, chronic diarrhea, chronic ear infections, not being able to eat solid foods, etc.  After countless trips to specialists and hospitals, he was finally diagnosed with a rare metabolic disorder called Purine Nucleoside Phosphorylase (PNP) Deficiency in August of 2015.

PNP Deficiency is so rare that only 70 people in the world have been diagnosed with it, and 33 in the U.S., according to the National Institute of Health. PNP Deficiency is one of several disorders that damage the immune system and cause severe combined immunodeficiency (SCID).  Finn has SCID, which has resulted in a lack of almost all-immune protection from bacteria, viruses and fungi; making him prone to repeated life-threatening persistent infections.  PNP Deficiency has also caused his neurological problems, developmental delays, and intellectual problems.  To date, there is no known treatment or definitive prognosis for the damage done to Finn’s neurological system.

To treat Finn’s SCID, he started intensive myeloablative chemotherapy on November 10, 2015 and on Nov. 21st he had the only successful treatment option for SCID; a bone marrow transplant.  After a total of 47 days in the Children’s Hospital of Philadelphia, Finn is so happy to be home.  Now we wait for evidence that his body is producing the T-Cells he needs to fight off these viruses and infections.

Recently Finn’s father has left his job to care for him which has added to the financial impact of this health crisis for the Stever family.

Letter from Finn’s Parents

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