Anthony is a loving and energetic six-year old boy. Anthony’s greatest love is playing with his older brother, Nicholas, whom he adores and looks up to.
Anthony was born on February 24, 2012 and was diagnosed at eight months old with an extremely rare genetic disease, Shwachman-Diamond Syndrome (SDS), which affects the bone marrow, pancreas, skeletal, and immune systems. 30% of children with SDS develop leukemia or aplastic anemia and require a bone marrow transplant during the course of their lives. Since his birth, Anthony's life has been a roller coaster. He has battled many major illnesses such as Cdifficile (c-diff), MRSA, sepsis, and atypical Kawasaki disease (just to name a few). At birth, he was also diagnosed with hypopituitarism. His pituitary gland does not excrete the hormones he needs to live and grow and he has been on hydrocortisone and human growth hormone. He is currently still below the third percentile for his growth and weight and he is neutropenic, which makes him very susceptible to getting sick much more easily than other children. Two years ago, a potential marker for leukemia was found on his bone marrow, which we have been watching closely. Since then, Anthony has had a bone marrow biopsy every three to six months.
We want to thank Mrs. Linda Dejana of the The Philip and Linda DeJana Family Foundation and Poppy’s Special Friends for our most recent trip to Disney World. Anthony and his brother had such an amazing time. We all were able to disconnect from reality for the week and enjoy one another and just have fun! This was a much-needed trip and we are so appreciative of your foundations recognizing Anthony and our family.