Raising a special son

A child with many medical conditions needs many advocates

When Michael Scotto was born three months early on Christmas Day, 1996, weighing one pound, eight ounces, his parents could not have known the challenges they would face. Born at Westchester County Medical Center, Michael struggled to stay alive. At 6 weeks, he contracted a staph infection which resulted in cerebral palsy and mental retardation. At 10 months, infantile spasms were treated. Michael’s seizures stopped for three years but then recurred in 2000. More emergencies resulting in hospital stays included an episode of kidney and liver failure. In 2002, Michael was diagnosed with Addison’s Disease, an immune system deficiency, and Adrenoleuko Dystrophy, a rare metabolic disorder.


Over the last thirteen years, Michael has endured numerous surgeries including a repair of a double hernia, retina surgery, opening of his urethral valve (the cause of his kidney failure), ear tubes and insertion of his feeding tube. Medical emergencies have resulted in helicopter trips to Westchester.


Today, Michael has a feeding tube, is legally blind and requires 24-hour care. Michael’s dad, Anthony, his step-mom, Kelly, and his mother Wendy, of Goshen, are dedicated parents who tackle each crisis with determination and courage. A visitor is introduced to a beautiful boy with a sweet smile. He shows his love every time he smiles at his parents. He reacts to having a book read to him and gets excited about going to school.


Michael loves school, says Scotto. He attends BOCES where he is in a class with six other students, all of whom are assigned a personal aide. Reading, arts and crafts and swimming are activities Michael participates in. He was also in several plays. “He was a turkey in a Thanksgiving play and an apple pie in another,” says Scotto. “His teachers are fantastic people.”


Reflecting on the years of ongoing medical emergencies, Scotto says he was never warned about the potential for serious complications for his child after he was born. “There are a million things they should talk to you about.” Scotto said the hospital social worker referred Michael to an early intervention program which included physical and occupational therapy. “We did come home with a diagnosis of Cerebral Palsy but they didn’t tell us what to look for,’ he said.


In one instance, a pediatrician told Michael’s parents that he had colic. The “colic” turned out to be a congenital birth defect that involves an abnormally placed urinary opening, causing urine to back up into Michael’s kidneys. Spending a day or two in the hospital with a child is stressful. Scotto says spending months in the hospital ages you. “There is no free time. You need help.” At the moment, Scotto is trying to find an after school program for Michael. In addition he needs a reliable part time aide who is qualified to dispense medications.


The good news is there are numerous resources. The bad news, says Scotto, is no one reaches out to offer those resources. “You need an advocate,” he said. Charles Smith, Supervisor of AHRC At Home Support programs is an advocate who arranged for Michael to participate in the Respite program, which provides two staff members who spend eight hours a week caring for him at home. “They put him in his chair and take him for a walk, read to him, and play games,” said Smith. “He loves to arm wrestle and pretend he’s dancing and driving a car.”


While resources may be numerous, the catch is that funding has been tough to come by for programs for children like Michael. Smith says that although Michael has been approved for enhanced services including at home residential habilitation and a personal care aide, state funding just isn’t there.


“The family is so gracious and appreciative of everything we do,” said Smith. “I wish I had a bucket of money to fund every program.” Scotto said he hoped Michael’s story would help someone in need, “but my fear is that it’s just a window into a very broken system.” “Michael is my hero,” he said. “He has taught me more than I fear I have taught him.”


Anita Manley is a freelance writer living in Newburgh.