Princeton bat mitzva helps a kindred spirit
Tali Schnitzer as a baby, when her hemangioma was, her mother said, “really shocking.”
April 8, 2013
Tali Schnitzer of Princeton was having a hard time finding a bat mitzva project that she connected with personally — until the perfect project presented itself at the Princeton Montessori School, where she is a seventh-grader.
Tali, who was born with a massive growth on her right cheek known as a hemangioma, noticed that a child in the school’s toddler program, two-year-old Joel Delarosa, had a malformation on his left cheek.
Joel, from the Dominican Republic, is in New Jersey for treatment with the support of Healing the Children, which provides donated medical care to children in need, and Tali’s teacher, Shannon Tuorto of Titusville, is fostering him.
Tali, who had 13 surgeries between ages two and eight to remove her “strawberry birthmark” and reconstruct her face, decided to help out her teacher by baby-sitting for Joel. Tali will celebrate her bat mitzva at the Jewish Center of Princeton on Sept. 28.
Tali’s mother, Nili Schnitzer, also got involved by connecting Tuorto with Tali’s doctor, Milton Waner of the Vascular Birthmark Institute in New York, 10 days before Joel’s visa would run out. His colleague, Dr. Alejandro Berenstein, treated Joel.
When Tali was born, doctors suspected a hemangioma, a benign tumor formed from abnormal blood vessels, and indeed, at two-and-a-half weeks, it filled with blood. Although they knew very early that it was not life-threatening, the disfigurement was “really shocking,” said Nili Schnitzer.
First they tried laser surgery, which required two people to hold the infant down during the treatment. Said Schnitzer, “It was pretty horrifying to do that to your child for something not even proven.”
Next came high doses of awful-tasting steroids, which compromised Tali’s immune system and kept her away from other people.
At six months, after the hemangioma burst open and Tali lost so much blood she almost needed a transfusion, they started to consider surgery. “Her nose and mouth were already disfigured,” said Schnitzer, “and she did not have normal fat in her cheek.”
The treatment process was grueling and all-encompassing for the family — including her father, Jamie, and brother, Adam. But Nili Schnitzer was grateful that Tali would ultimately be fine — which is not necessarily true of other children undergoing similar treatment. Schnitzer said such children often end up looking healthy, but aren’t all “as lucky as Tali.”
From the beginning, Schnitzer was concerned with the potential emotional toll on her daughter. “I knew that the psychological trauma was what could have affected her, and I was determined to do whatever I could to make everything normal,” she said.
A big challenge was taking Tali out in public. “In a restaurant everyone would turn around and stare, and when we crossed the street, traffic would stop,” she said.
But what Schnitzer came to realize was that people were simply concerned and that the best response was to share information. “I was so upset about it inside, but I kept repeating it over and over, and after years of repeating, ‘Oh, it’s just a birthmark,’ it indeed became ‘just a birthmark,’” she said.
For Schnitzer, the experience was life-changing. Before Tali, she said, “I never had time for anyone. My life was just about what was important to me.”
Tali takes her early challenges in stride. When she looks at pictures of herself with the hemangioma, she said, “It is nothing scary for me — just something that is just there.”
And that’s just how she sees Joel. “If I compare him to another toddler,” she said, “he is as energetic, loving, really cute, and a fun kid to play with — no different than any other toddler.”