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    Friday, August 12, 2022

    Baby with disability both a joy, challenge

    Kimberly Osborne, 24, and Jason Perillo, 31, of Watertown, hold their 10-month-old daughter, Ava, as they pose for a photo last month in the living room of their home in Watertown. Ava suffers from a rare birth defect known as bilateral anophthalmia, in which the baby's ocular tissue, or eyes, do not develop during the first month of pregnancy. It occurs in about one out of every 100,000 children.

    Watertown (AP) - As the camera clicks, 10-month-old Ava Jean Perillo's head cocks to the side, and a wide smile spreads across her cherubic cheeks.Television interviews and calls from reporters have slowed, but life is coming fast at the celebrity infant who has captured so many hearts with her joy for life and angelic demeanor.

    Television interviews and calls from reporters have slowed, but life is coming fast at the celebrity infant who has captured so many hearts with her joy for life and angelic demeanor.Ava suffers from a rare birth defect known as bilateral anophthalmia, in which the baby's ocular tissue, or eyes, do not develop during the first month of pregnancy. It occurs in about one out of every 100,000 children.

    Ava suffers from a rare birth defect known as bilateral anophthalmia, in which the baby's ocular tissue, or eyes, do not develop during the first month of pregnancy. It occurs in about one out of every 100,000 children.These days, Ava is a ball of energy, bouncing wildly in her stationary entertainer as she giggles and coos.

    These days, Ava is a ball of energy, bouncing wildly in her stationary entertainer as she giggles and coos.The little girl and her doting parents, Kimberly Osborne and Jason Perillo, have settled into a cozy Watertown townhouse, where Ava's playpen, rocker and high chair dominate the living room and a steady stream of therapists and teachers keep her busy learning the skills she will need later in life. Between house calls and doctor visits, taking care of Ava keeps the young couple on their toes.

    The little girl and her doting parents, Kimberly Osborne and Jason Perillo, have settled into a cozy Watertown townhouse, where Ava's playpen, rocker and high chair dominate the living room and a steady stream of therapists and teachers keep her busy learning the skills she will need later in life. Between house calls and doctor visits, taking care of Ava keeps the young couple on their toes."It's good because we know she's up to date with everything but it is hectic," Osborne said from her living room recently. "There's no training manual for how to raise a child, let alone one with a disability."

    "It's good because we know she's up to date with everything but it is hectic," Osborne said from her living room recently. "There's no training manual for how to raise a child, let alone one with a disability."Like other infants, Ava has picked out her favorite toys, outfits, foods and in particular, music. Perillo said she probably has more CDs than he does.

    Like other infants, Ava has picked out her favorite toys, outfits, foods and in particular, music. Perillo said she probably has more CDs than he does."It's music, music, music, all day long," Osborne said. "She likes the Rolling Stones, Pink Floyd, mostly classic rock ... my dad was like no Lady Gaga."'

    "It's music, music, music, all day long," Osborne said. "She likes the Rolling Stones, Pink Floyd, mostly classic rock ... my dad was like no Lady Gaga."'She has also begun sounding notes on the piano, they said.

    She has also begun sounding notes on the piano, they said."She'll hit a few keys, listen, then wait until the sound is over and then play a few more," Perillo said.

    "She'll hit a few keys, listen, then wait until the sound is over and then play a few more," Perillo said.But born in world of darkness, teaching her simple things like rolling over and crawling has been a challenge. Sight facilitates movement, Perillo said, and because she doesn't see things to pique her curiosity, she doesn't have the incentive to reach out and grab, or explore.

    But born in world of darkness, teaching her simple things like rolling over and crawling has been a challenge. Sight facilitates movement, Perillo said, and because she doesn't see things to pique her curiosity, she doesn't have the incentive to reach out and grab, or explore."We're really working on her independence," he said. "She needs to be a much more independent person to be very strong, and secure in herself."

    "We're really working on her independence," he said. "She needs to be a much more independent person to be very strong, and secure in herself."Sometimes, that means letting her figure things out on her own, her parents said, even when they desperately want to help.

    Sometimes, that means letting her figure things out on her own, her parents said, even when they desperately want to help.It's tough love, but it's the right thing to do, said Michelle Contey, of Stow, Mass., who along with eight other parents of children with anophthalmia founded an online support group called Micro Anophthalmia Parent Support.

    It's tough love, but it's the right thing to do, said Michelle Contey, of Stow, Mass., who along with eight other parents of children with anophthalmia founded an online support group called Micro Anophthalmia Parent Support."It's just a place for sharing and for being with other people that know what you're going through," she said. "You kind of think, because it's so rare, there's nobody out there that's dealing with what you're dealing with."

    "It's just a place for sharing and for being with other people that know what you're going through," she said. "You kind of think, because it's so rare, there's nobody out there that's dealing with what you're dealing with."Parents don't give out medical advice, but do discuss the pros and cons of various treatment options, Contey said. Her son, Matteo, 8, was born with bilateral anophthalmia and a cleft palate. These days, he goes skiing, kayaking and participates in special needs baseball and swimming. He can really do anything, she said, it just takes a little longer to teach him.

    Parents don't give out medical advice, but do discuss the pros and cons of various treatment options, Contey said. Her son, Matteo, 8, was born with bilateral anophthalmia and a cleft palate. These days, he goes skiing, kayaking and participates in special needs baseball and swimming. He can really do anything, she said, it just takes a little longer to teach him.Many parents in the group have attempted to discover what caused anophthalmia in their child, but most of the time they're unsuccessful, Contey said. The defect has been linked to mutations in several genes, as well as the fungicide Benlate.

    Many parents in the group have attempted to discover what caused anophthalmia in their child, but most of the time they're unsuccessful, Contey said. The defect has been linked to mutations in several genes, as well as the fungicide Benlate.International chemical giant Dupont Co. has settled lawsuits in Delaware, Britain and New Zealand with dozens of families who had children born without eyes, or with abnormally small eyes.

    International chemical giant Dupont Co. has settled lawsuits in Delaware, Britain and New Zealand with dozens of families who had children born without eyes, or with abnormally small eyes.Perillo and Osborne said they underwent genetic testing, but no abnormalities were discovered, leaving them simply to accept the situation and strive to provide Ava with a normal life.

    Perillo and Osborne said they underwent genetic testing, but no abnormalities were discovered, leaving them simply to accept the situation and strive to provide Ava with a normal life."It was a fluke. Nothing caused it," Perillo said. "We're the one in 100,000."

    "It was a fluke. Nothing caused it," Perillo said. "We're the one in 100,000."An outpouring of support from the community has helped Ava immeasurably, they said.

    An outpouring of support from the community has helped Ava immeasurably, they said.In the past six months, donations and fundraisers have provided her a financial cushion to help with medical expenses, and will someday allow her to learn Braille, as well as take advantage of new computer technologies.

    In the past six months, donations and fundraisers have provided her a financial cushion to help with medical expenses, and will someday allow her to learn Braille, as well as take advantage of new computer technologies.On Christmas Eve, the family was featured on the national TV program "Inside Edition."

    On Christmas Eve, the family was featured on the national TV program "Inside Edition."Several state news stations have also run stories on Ava, making her a recognizable face around town.

    Several state news stations have also run stories on Ava, making her a recognizable face around town."People have wanted to touch her, to pray with her," Osborne said. "I don't turn anyone down."

    "People have wanted to touch her, to pray with her," Osborne said. "I don't turn anyone down."The two seem to recognize the power the little girl has had, and are a perfect picture of proud parents.

    The two seem to recognize the power the little girl has had, and are a perfect picture of proud parents."She's brought people together that never would have met," Perillo said, "and that's an amazing feat."

    "She's brought people together that never would have met," Perillo said, "and that's an amazing feat."

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