Rachel Amar, the mother of Max, has faced a difficult journey with her son, which began when Max was born with brain stem atrophy, a diagnosis that doesn’t allow him to breathe, swallow, regulate his temperature or move on his own. Max spent almost his entire first year in the NICU and then the PICU before being transferred to an acute rehabilitation facility at 8 months old.
However, after about a year, Rachel realized that acute rehab was not an appropriate fit for her son. That’s what spurred Rachel to begin to search for a facility that could not only care for her ventilator-dependent child from a medical standpoint, but also one that could provide him with the dignity, love and experiences he deserves.
But what she found was that at that time there were no facilities in New York State that could provide what she and Max so desperately needed. The Department of Health collaborated with Rachel to search for a place that could deliver long-term, ventilator care for Max and other children like him in their home state of New York. When they, too, discovered that there was no facility to meet these requirements, they asked Pat Tursi, CEO of Elizabeth Seton Children’s, to develop the first program of its kind in the State.
On August 21, 2006, Max was the first ventilator-dependent child moved to Elizabeth Seton Children’s Center. “Max started going to school for the first time in years and I knew he was receiving great care. Plus, driving to Manhattan [from my home in Long Island] was the closest I had been to my son in years,” Rachel said.
When the Center relocated to their brand new, state-of-the-art facility in Yonkers in 2012, Rachel was thrilled. “I know it’s better for Max,” she said, who is now 16 years old. “It’s all in the ambiance. The facility is bigger, the building is beautiful and child-friendly and I can take Max outside. More than anything, though, it’s the feeling that we’re in a home, not a hospital.”
Rachel also lauded the staff for their involvement. “There’s no other place like this. It’s truly more than just a job for the staff here; their love is genuine and they take being ‘caregivers’ to another level,” she said. “I finally have peace of mind when I leave my son for the day.”
“When I come here, it’s relaxing,” Rachel continued. “I look forward to it because I know that Max is happy, clean, cared for and attended to. That means that when I visit, I can just enjoy being with my son,” she said. “Some days, I accompany him to school and other times we just lie in bed together and read but, each day, I get to kiss him … and I kiss him like crazy!” Rachel laughed. “Once I get that smile, my whole day is made.”
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