Family Finds Support at Bellefaire JCB
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Andrew* has been a resident in the Monarch Boarding Academy at Bellefaire JCB, a Federation beneficiary agency, since he was fifteen years old. His parents, a physician and an attorney, raised him in their loving eastside suburban home, until they could no longer. As an adolescent, Andrew, diagnosed with autism and Prader-Willi Syndrome, became more and more difficult to manage. His inability to communicate and his self-injurious behaviors meant one of his parents, or a caregiver, had to be present nearly 24 hours a day.
When Andrew moved into Bellefaire’s Monarch Boarding Academy, his mother declared it the greatest gift of all and the first time she had an uninterrupted night of sleep in many years. Andrew has thrived in Bellefaire’s programs for individuals with autism, but his situation is complicated by his Prader-Willi Syndrome. Prader-Willi Syndrome is a complex genetic condition that affects many parts of the body. In Andrew’s case, in addition to some physical ailments, he lacks an ability to feel pain and he has eating challenges. Coupled with his inability to communicate, Andrew is at great risk for a medical emergency; Andrew has been hospitalized several times for what would otherwise be a routine illness in another child, such as strep throat.
In early February 2020, Bellefaire JCB’s nurse detected that Andrew had a fever and mild cough. As is the protocol, he was transported to a local hospital where he remained for over week. His oxygen was low, his fever persisted, and he was lethargic. The staff from Andrew’s unit remained at his bedside for days. They tended to Andrew and ultimately to his parents when they flew back from their winter home in Arizona to be at their son’s side. His sister from out of town flew in; all believing that Andrew may not survive. This occurred just prior to the known onset of COVID-19 in our community but there is strong belief that Andrew may have been an early case.
Andrew, miraculously, fought back and ultimately was discharged from the hospital to return to his residence on Bellefaire’s campus. His parents were able to return to Arizona and his sister to her home in Illinois. Everyone will get one more night of sleep.
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*Name changed to protect identity of client