A Chance to Tell Her Story

The dining room of Melissa Perry’s Collingswood home is crowded on a rainy Wednesday afternoon in April.

It’s a packed house because it's a big day. Together, a group of specialists will make a determination whether they believe her daughter, Sara Ann Kronrot, is ready for her first day of school.

Sara Ann is 8 years old and does not often leave the house. She must be attended at all times by a parent or qualified nurse because the severe cerebral palsy that has afflicted her since birth could cause her to die in any number of ways.

Providing that kind of round-the-clock care has driven the family to the brink. Although there are few parents who wouldn’t bear significant hardship to provide for their children, Perry and her husband, Hugh Kronrot, have nearly exhausted their resources.

Moreover, the constant need to care for their medically fragile daughter has sidelined the world-class musicians—Perry, a trained opera soprano and vocal coach; Kronrot, an orchestra conductor—effectively isolating them from the world.

If the education team decides that Sara Ann is ready for school, things could change in a hurry. A recently enacted law rooted in the troubles of the Welshes, another Collingswood family with vulnerable children, would allow her to be accompanied by the nurses who have provided her home care.

It’s taken months to train them; even the nursing staff at a specialized facility wouldn’t be as attuned to her needs. Since Sara Ann can’t support her trunk or her head, she must be frequently re-positioned. Her airway can be easily compromised, leading to seizures that only subside after the administration of drugs. Without constant suctioning, she would choke on her own secretions.

All of these conditions make a nurse more like an emergency first responder rather than a one-on-one aid. The family is on a first-name basis with the local EMS; in eight years, their daughter has had more than 70 ambulance rides and more than 100 hospitalizations. Even with insurance paying for 16 hours of care per day, many nurses won’t take on the job simply because of the stakes.

Sara Ann’s been playing long odds since birth. Her parents had to convince doctors that the brain injury that disabled her didn’t damage her cognition. She learned the alphabet at 3; she can write in cursive if someone holds her hand to steady a pen. Nobody knew Sara Ann could spell until she had gained enough fine motor skill to form letters. What she might gain from a formal classroom environment is, in some sense, limited only by her imagination.

The family needs help if they’re going to get her there. That’s why Perry —one show at 6 and another at 8 p.m.—at Haddon Heights High School on Saturday, May 12. For a $12 ticket, supporters will be treated to a repertoire performed by Perry’s vocal students, many of who are already carrying leading work on Broadway.

Any money raised will help preserve the household, support Sara Ann’s future surgeries and pay for her physical therapy. It'll help keep things moving long enough for there to come a day when she may be healthy enough to live a fuller life, to express herself independently.

For now, however, Sara Ann gets by with a little bit of help holding the pen. Given the opportunity, she’s all too happy to demonstrate just how much she has to say.

“Hi, how are you?” she writes. “I like you.”

When asked to consider all the things she could do with a successful academic career, Sara Ann sums up her reasoning for going to school in a few words.

“To tell my story,” she writes.