Advocating for My Daughter with Special Needs

As told to David Paone

I'll start at the beginning: I was born in Queens in 1965 and moved to West Hempstead about two years later. I met Paul while we both attended Queens College, but he repulsed me, in true romantic comedy fashion. Eventually we became best friends, but when I set him up on a blind date, I knew I had made a mistake and wanted him for myself. We were married on Dec. 31, 1989. I had told him if we didn't get married in 1989, we were never getting married. Beginning a marriage with an ultimatum is always a good idea. We weren't planning on third child after Katy and Paul, but in 1999 I heard on the radio that if we were to conceive a child within the next few days, we would most likely have a Millennial, born by Dec. 31. We got on that right away. Peri was born on our 10th anniversary. We didn’t expect what lay before us.

Much of Peri's young life has included medical emergencies and hospital stays that last for months. By the time she was 2, she had both CPR and the Heimlich maneuver performed on her twice, including by Paul.

Sometimes I have flashbacks of them cutting her dress open in the ER and pounding on her.

Many children born with nemaline rod myopathy, a form of muscular dystrophy, don't survive past the age of 7. Peri has survived one muscle biopsy (at 9 months old), nearly 25 sets of ear tubes, more than a dozen bronchoscopies, a tracheotomy, the removal of her tonsils and adenoids, a broken femur, two broken tibiae, and eight scoliosis surgeries.

Physically and medically, Peri's obstacles were immense. But one early piece of advice we took heed to was to "maximize her potential." We've always been very positive with Peri. We haven't said, "she's never going to do this." We always assume she can do it.

That approach has worked. Peri made honor roll every quarter in sixth grade. The year before, she won the excellence award for her class at graduation. More recently she was salutatorian at her graduation from Henry Viscardi School in Albertson.

I didn't know it at the time, but all during my young life I was learning the skills that enabled me to care for such a child.