Sara and John's Story
When John and Sara Rosati come to The Children's Hospital of Philadelphia for their regular appointments, just about everyone they see knows their names. That's because John, 13 years old, and his sister Sara, 8 years old, have been coming to CHOP since they were first born.
Diagnosed with Trisomy 21, John and Sara were both transferred to CHOP within a few hours of life. It's no surprise that they are like family at the Hospital — or "royalty," according to Sara and John's mom, Stephanie. With two biological children with Down syndrome, the Rosati family has been visiting several times a month for more than 13 years.
When John, at age 9, first met with Dr. Mary Pipan, clinical director of the Trisomy 21 Program, he was diagnosed with "crouched gait" — a leg condition in which a child appears to be crouched down. No other physician had been able to determine this diagnosis until this time. Dr. Pipan referred John to orthopedics and physical therapy.
Sara, at age 5, was diagnosed with velopharyngeal incompetence (VPI) — a disorder affecting speech — in her first exam at CHOP and was referred to a speech pathologist for evaluation. More recently, Sara outgrew her stroller and Dr. Pipan made arrangements and provided all necessary support documentation for her to get a medical stroller.
"Dr. Pipan is such a knowledgeable and compassionate physician. Her examinations are extremely thorough and she never makes a recommendation that she does not follow through with, regardless of the work on her part," says Stephanie.
Although John and Sara see various specialists for follow-up regarding their conditions, Dr. Pipan is their point of contact for the overall picture — medically and developmentally. Stephanie explains that it can be challenging not to have in-depth support from a physician who is truly educated about Down syndrome.
"There are many things that a person with Down syndrome may encounter, but now I do not worry about those things because I know Dr. Pipan will have a watchful eye and let me know when something needs to be looked at further," she says.
"Knowing that I will have a comprehensive visit at least yearly with the Trisomy 21 Program, I feel like I can relax and focus on just being a mom."
When they visit the Hospital, John and Sara love to play with the toys in the Atrium. They enjoy having picnics in front of what they call "the ball turn" — a display with a ball maze and cars located in the Atrium.
Their mom appreciates their visits on another level. "I am forever grateful that I was blessed with John and Sara. Through my experiences, I have developed a true sense of gratitude and respect for CHOP. If it was not for CHOP, I would not have my children today. So I was blessed yet again, in that I live close enough to CHOP that my children can receive all their care there."
About a year ago, Stephanie joined the Family Advisory Council, a group who meets with physicians and brings a "family voice" to important decisions made at the Hospital.
"I feel honored that they asked me to be a part of the Hospital in that way and I am happy to have an opportunity to try and give back a piece of what they have given me. It is through my time on the Council that my gratitude and respect have deepened. What I learned is that even though they have been voted the number one Children's Hospital time and again, they are realistic about perfection only being something to strive for and that even at number one, there is always room for improvement."
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