Sophie Ostrove is an 11-year-old who looks at her disability as a chance to show the world she can do anything.
A sixth grader at Rabbi Pesach Raymon Yeshiva in Edison, the Highland Park tween was born with oculocutaneous albinism, and is affected by a related eye condition, nystagmus, or involuntary eye movement.
Even with eyeglasses, Sophie has limited distance vision and sometimes uses magnifiers to see things far away. But rather than see her difference as a drawback, she looks at albinism as a plus.
“A lot of people think this may not be so great, but I sit in the front of the classroom and get special seats when seeing shows, so what could be so bad about it?” she asked. “I try to be as optimistic as possible. But really, having albinism is great. I was born with it, so that is all I know…Some people may think I have limitations because of my vision, but I think albinism is just another reason to do more.”
Sophie will bring that spirit to a fund-raising project linked to her May 26 bat mitzva. On March 23, “Sophie’s Partying Penguins” will participate in an annual bowl-athon weekend for NOAH, the National Organization for Albinism and Hypopigmentation.
NOAH, a nonprofit, supports families, educates medical and education professionals, and supports research in the field. “We credit NOAH for making Sophie everything she is today,” said Sophie’s mother, Randi Ostrove.
Ostrove said the family team includes her husband Elliot, and son Jake, 15. For the past seven years, they have raised about $7,000 annually from family and friends. This year the pledge goal has been upped to $10,000.
“It gives us a chance to raise awareness and reflect on what NOAH has done for our family,” said Ostrove.
Ostrove recalled receiving Sophie’s diagnosis when she was an infant.
“The pediatric ophthalmologist we saw gave us a doom and gloom diagnosis that she would most likely be legally blind, have to go to a school for the blind, never ride a bike, never enjoy a movie, and there was nothing we could do for her,” she said. “My husband and I cried the whole way home in the car.”
They searched on-line and found NOAH, where they read stories in its forum of both children and adults who were living full lives, despite their albinism. In addition to the fair coloring of the skin, hair, and eyes, albinism is associated with sometimes severe vision problems and sensitive skin.
With the organization’s support they sought a second opinion that “changed the outlook from doom and gloom to one of endless possibilities.” Ostrove has written for NOAH’s quarterly magazine and contributed to a book published by the organization.
“Sophie is truly a unique kid,” said her mother. “Everybody who meets her agrees she is a very funny kid, very sharp, who takes art lessons, is a prolific writer, participates in track, soccer, and basketball programs with the Highland Park Recreation Department, loves theater and goes to theater camp in the summer, plays piano. She rides a bike and wants to do everything. We have to sometimes hold her back. She really is proud and feels albinism makes her who she is. She really owns it.”
The bat mitzva will be held with the Women’s Tefillah Group of Raritan Valley rather than at the family’s synagogue, Congregation Ohr Torah in Edison, so that Sophie can chant Torah. Ostrove said after hearing her husband teaching their son in preparation for his bar mitzva, Sophie demanded equal treatment.
As long as there are fewer than 10 men, a situation that would create a minyan and prove problematic under Orthodox guidelines, Sophie’s brother, father, and grandfathers will be able to attend.
“I’m really proud to have this great opportunity to show that even the sky isn’t the limit,” Sophie told NJJN. “Just because I have this condition doesn’t mean I can’t do what I want with my life. I hope to be a role model for others with a disability because having a disability means you have one or two things you can’t do, but doesn’t mean you can’t do everything.”
As of press time, Sophie had raised $7,218 toward her goal. To donate, visit noah.kintera.org/bowl/sophie.