Hans "Bubby" Bernard Ostertag

Hans “Bubby” Bernard Ostertag died peacefully in the arms of his parents on the morning of June 16, 2023 at SSM Health Cardinal Glennon Children’s Hospital at the age of 5 years old. He was surrounded by family and his friends from the hospital care team during his final moments. 

            

Hans was born on June 22, 2017, in St. Louis, MO. Within 3 months of his birth, he was diagnosed with the rare genetic disorder, Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder (PBD-ZSD). This terrible disorder affected Hans in many profound ways: seizures, chronic anemia, liver disease, deaf blindness, feeding difficulties, and many other challenges. Hans had a wonderful care team composed of doctors, nurses, therapists, and many other individuals who helped him and our family along this journey.

 

Despite all the challenges associated with this disorder, Hans was a happy little boy who loved to laugh, snuggle, and spend time at home with his family on his “spot” on the couch or snuggling in the recliner. His favorite things were soft blankets and plush stuffed animals. When Hans was younger, he would squeal and wiggle at all hours of the night. He explored the world around him with his little fingers, often reaching for his feeding tube extensions or his socks—and both would end up in his mouth. We bought him so many fun tactile toys, yet he was content playing with all the things in his environment that were not toys. He would roll on the floor and reach for the edge of his foam playmat, and then pull up the squares and try to eat those, too. He was an active and vocal little toddler!

 

As the years went on, Hans faced more challenges from the progression of his rare disease. Hospital stays became longer and more frequent; Hans had over 40 inpatient hospital admissions during his life. We used to joke that Hans would get sick because he wanted to go to the hospital and “flirt” with his nurses—he stole the hearts of everyone who knew him. All of his caregivers would comment on his beautiful long, curly eyelashes and his thick wild hair. 

 

Hans is survived by his loving parents, mother Rachel Ostertag (neé Neel) and father Christopher Ostertag, and big sister Sophia Ostertag. He was the beloved grandson of his grandmother Janine Koch Neel, grandfather Frank “Pop Pop” Neel, grandmother Cami “Grammy” Ostertag, and grandfather Earl Ostertag. Hans was also loved by his great-grandparents Dean and Connie Scott. He was the dear nephew of his aunts Audrey “Audoo” Neel, Teresa Ostertag, Jessica Ostertag, Rebecca Ostertag, and uncle Joseph (Rebekah) Ostertag. He was the cherished grand-nephew of Carman (Harry Jr.) D’Agostino and cousin of “lake buddies,” Catherine D’Agostino and Harry D’Agostino III. Hans was also treasured by many cousins, great-aunts, great-uncles, and the entire Global Foundation for Peroxisomal Disorders family.

 

While Hans will be missed terribly, his memory will live on through those who knew him and loved him. Words cannot capture the impact Hans had on the world around him, and he reminds us that we should strive to live in the present moment and that we do not need words to love profoundly and care deeply. 

 

In lieu of flowers memorial donations can be made to The Global Foundation for Peroxisomal Disorders or SSM Health Cardinal Glennon Children's Hospital Footprints Program.