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'That's what mothers do'

Elyse NeMoyer, 58, holds hands with her daughter Caitlin, 27.

"Do you want some cold water? I know you like your filtered water. You're becoming a bit of a snob," Elyse jokes.

She pours the water from a pitcher into a specially made cup and holds it up to Caitlin's lips. Caitlin turns her head to avoid it.

"Seriously? It's cold water! I'm not giving you medicine -- it's what you like," Elyse laughs, then cajoles. "OK, well, I know you know your mind."

Elyse and Caitlin are visiting in a sunny room at Baker Victory Services in Lackawanna, where Caitlin came to live in 2007.

Caitlin, the second of NeMoyer's four daughters, has an intellectual disability disorder called Alpha Thalessemia Retardation X-Linked, which kept her from ever learning how to speak, walk or care for herself. It's so rare that when she was diagnosed at age 4, it had been identified in just 13 other people in the world.

Caitlin grew up at the family's Orchard Park home, cared for by her family except for brief respite stays at Baker Victory Services. She also attended school programs during the day, while Elyse worked part time as an occupational therapist.

"Early on, the medical staff told me, 'Now, you're going to need to have people come to the house and help you,'" Elyse said. "I would say, 'Oh, good, are you coming over?'"

Caitlin's father, Pat, a New York State Supreme Court judge, helped. And Caitlin's sisters also took on the role of caregiver. Older sister Erin is now 31 and a veterinarian and new mother in Long Island. Her sisters, fraternal twins, are 24. Amanda is working toward a joint Ph.D. in psychology and law at Drexel University in Philadelphia; Rachel is in her second year of medical school at the University at Buffalo.

"Since we grew up with it, it was expected," Rachel said, about helping care for her sister. "That was our family, that was what you did."

All three daughters said their mother made sure caring for Caitlin never got in the way of their many and varied extracurricular activities -- track, gymnastics, horseback riding lessons, you name it.

It took extra planning and creative scheduling, but the girls said their mom also attended their games and performances.

"I'll be honest, I'm not sure how she made it work," Amanda said. "She didn't make it seem like it was difficult for her, she just took everything in stride. [She] added it to the 'to do' list and went from there."

The NeMoyers had always envisioned Caitlin remaining at home -- even while Elyse battled breast cancer in 1995. But when cancer struck a second time, this time leukemia in 2007, the severity of Elyse's condition forced them to look for longer-term placement. That was when Caitlin came to Baker Victory Services.

The hardest part for Elyse was when she had a bone marrow transplant. She couldn't visit Caitlin for six long months. She recorded messages for her daughter and talked to her over the phone.

The NeMoyers planned for Caitlin to come home, but decided to let her stay after seeing how happy she was and how she was thriving.

"Guilt is associated with almost every part of being a mother," Elyse said. "When I found out she had been on 42 field trips in a year, I said to my husband, 'Oh, Pat, I'm a terrible mother. I never did those things with her.' "

Anyone who has met Elyse NeMoyer disagrees. "This family is so committed," said Sheila Walier, who works at Baker Victory Services. "[Elyse] has been through so much, but you would never know it, because she's so upbeat and positive."

If you ask Elyse, she will say her family is not exceptional in any way other than that it has been exceedingly fortunate.

"Everything that could have gone well for us has," Elyse said.

And caring for her daughter doesn't make her any different from any other mom.

"I'm just a mother," she said. "That's what mothers do."