Olsen is diagnosed with Pfeiffer Syndrome, which is a rare genetic disorder effecting the the skull, hands and feet, as well as causing bulging and wide-set eyes, and other facial structure issues.
More than half of all children with Pfeiffer syndrome have hearing loss and dental problems are also common. In Olsen`s case, there is added neurological and developmental issues. Olsen spent the first 2 months of his life in the NICU, and has had about 15 surgeries to date. He has a trach, a g-tube and a shunt in his head. Olsen requires 24-hour nursing care. His care requires such skill that only his mother or a nurse can take care of him. Even with Medicaid approved 24-hour nursing, it is very hard to find nurses available for this level of care, and the current environment with coronavirus has only made things more difficult.
As a single mom caring for Olsen, Esther has had to leave her job, and will return to work as soon as she is able to secure appropriate care for Olsen. CTCF has granted the family an air purifier for the apartment (necessary for Olsen`s health situation) and gift cards to help with the cost of groceries and household needs.
