'Baby Jane Doe' at 30: Happy, joking, learning
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Keri-Lynn was a bit sensitive about getting older.
At her family's Mount Sinai home Sunday, where about a dozen family members celebrated her 30th birthday with flank steak, chicken francese, cake and lots of joking, she had a quick retort when her father Dan ribbed her about turning the big 3-0.
"Don't start with that!" said Keri-Lynn, who uses a wheelchair.
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Marking three decades of their daughter's life was a watershed moment, said Keri-Lynn's parents. Long known as "Baby Jane Doe" in court papers, Keri-Lynn was born Oct. 11, 1983, with spina bifida and became the anonymous symbol in a national debate over the role of government in the health-care decisions made by the parents of severely disabled children.
"Everything's good with her," said Dan, who spoke with Newsday Sunday on the condition that the family name be omitted to ensure their privacy. "This is a milestone we never thought we would see."
Her parents, on the advice of Keri-Lynn's doctors, wanted to forgo surgery and provide only nutrition, medication and protective coverings for their daughter's open-spine condition.
Spina bifida is marked by an opening in the spinal column; hydrocephaly, excess fluid on the brain; microcephaly, an abnormally small head; and kidney damage.
But a right-to-life advocate sued for guardianship in state court and federal authorities attempted to gain access to Keri-Lynn's medical records.
State and federal courts both ruled in favor of Keri-Lynn's family and ultimately her spinal gap closed on its own, sparing her family an anguished decision.
Two years ago, Keri-Lynn, a talkative and smiling young woman, moved into a nearby group home, where she attends academic and physical therapy classes Mondays through Fridays. She comes home every Friday afternoon on her school bus, and heads back Monday mornings.
Her mother, Linda, says living away from her family has given their daughter a sense of independence and was necessary to ensure her continued health and welfare when she and her husband are no longer around or able to care for Keri-Lynn.
She still sees doctors frequently, her family said, takes medication for seizure control and wears a full body brace to help with her spine strength. The health of her kidneys is paramount. For now, she is well.
At her party Sunday, Keri-Lynn wore a black and white dress, earrings and a necklace her parents bought her as presents. A stack of birthday card envelopes on the kitchen table held gift cards that her mom plans to use to buy an iPad, so Keri-Lynn can play solitaire -- one of her favorite games -- digitally.
"She's happy; I'm content," said Linda. "I just take one day at a time. That's the only way to do it with a child with disabilities."