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<\/p>\nVincent Ognibene and his family are pictured at left during their recent trip to visit him ahead of his birthday. Vincent Ognibene\u2019s mother, Alicia Burch, said while the local hospital could not handle his needs, they found a place in New York City that could, even if it meant sacrifice and distance.
\nSubmitted photos<\/p>\n
The Jamestown woman is also no stranger to advocating for the needs of her son, something which recently took them all the way to New York City to get Vincent the help that he needs. Ognibene is just about ready to turn 24 years old, and has lived his life with Lennox-Gastaut Syndrome, a rare and severe form of epilepsy that affects his development, behavior, and overall safety. <\/p>\n
\u201cOn July 22 of 2024 he experienced a very different seizure than he\u2019s used to that lasted 28 minutes,\u201d Birch said. \u201cOn August 18, 2024 he entered a dual crisis. His seizures worsened and his behaviors became increasingly dangerous. For months we lived in a constant emergency.\u201d<\/p>\n
Between that day in August and when he left for New York City in April 2025, Ognibene was taken to the local hospital more than 80 times, so many times that Birch said she stopped counting. This included having him be brought in several times a day some days.<\/p>\n
\u201cIn the beginning, it felt like everyone was trying their best,\u201d Birch said. \u201cBut over time, as the visits piled up and there still wasn\u2019t a long term plan, the approach changed. Evaluations became quicker, treatment was often\/usually denied, and instead of relief we were met with frustration and blame. It was devastating to feel like we were being pushed out at the moment we needed help the most.\u201d<\/p>\n
<\/p>\n
Birch said eventually she came to terms with that it was not that the hospital staff did not care, but rather that the local area simply does not have the specialized neurobehavioral services required for someone like Ognibene. Her son\u2019s needs were far beyond what the local system was built to handle, and Birch said something else needed to be done.<\/p>\n
\u201cAs drastic as it sounds, to keep him alive and to keep others safe, we had to look further,\u201d Birch said. \u201cAll the way to New York City, for real solutions and to find care that truly understands LGS.\u201d<\/p>\n
Birch said there is nowhere in the Western New York area that offers the type of neurobehavioral care for someone like Ognibene and the specialists that understand Lennox-Gastaut Syndrome on a deeper level and that have an inpatient program equipped to treat both seizures and dangerous behavioral dysregulation are in NYC. <\/p>\n
\u201cWe had to choose between staying local with care that couldn\u2019t meet his needs or traveling hundreds of miles for a chance at stability and safety,\u201d Birch said. \u201cWe chose hope, even though it meant distance and sacrifice.\u201d<\/p>\n
Ognibene was taken to a group home in the Bronx, where Birch said the cycle continued as another hospital they took him to in the city attempted to help but was again not equipped for the intensity of his needs. This then led Ognibene to Kings County Hospital in Brooklyn, which hosts a developmental evaluation clinic through the New York State Office for People With Developmental Disabilities. <\/p>\n
\u201cThis clinic specializes in neurobehavioral care for individuals with complex conditions like LGS or other crises,\u201d Birch said. \u201cBut getting Vincent there wasn\u2019t easy. I had to challenge the system at every turn, making countless phone calls, sending emails, and pushing past a lot of \u2018no\u2019 before we finally found a \u2018yes\u2019. Once Vincent arrived at Kings County, it was a different world. They didn\u2019t just see Vincent as a set of behaviors or seizures, they saw him as a whole person who needed comprehensive specialized care.\u201d<\/p>\n
Birch said the hospital took the time to observe him deeply and find the right medication regimen and to create a safe environment where he could stabilize. She added that they understood that his behaviors were symptoms of \u201can underlying neurological storm and that needed a tailored approach.\u201d<\/p>\n
\u201cIn short, they did what our hospital couldn\u2019t, they combined medical expertise with compassionate individualized care, a person centered approach,\u201d Birch said. \u201cThanks to that, Vincent is now on a path where he can actually focus, engage and hopefully thrive back at the group home.\u201d<\/p>\n
Ognibene was discharged back to the group home on Dec. 8, and Birch said the hope is that his progress continues. Ognibene has been at the home for about two weeks now, and staff are reporting that there is already a visible improvement to his behavior, including being increasingly able to pause and think before reacting and is showing reduced aggressive behaviors. Vincent\u2019s family also recently traveled from Jamestown to New York City to visit him ahead of his upcoming 24th birthday, with their visit including seeing Christmas lights, bowling, and sharing pizza. <\/p>\n
In the long term, Birch said the goal is to push for more specialized resources in the local area so families such as theirs do not have to be separated or hit so many barriers just to access needed care. <\/p>\n
\u201cVincent deserves community, quality of life, and a future filled with family and support,\u201d Birch said. \u201cI will keep advocating until that exists.\u201d<\/p>\n
For any other local families in the same or similar situations, Birch said the most important thing to do is to never stop pushing. When someone is told no or that there is nothing else to be done, she said people need to ask the next question, send the next email, or call the next hospital. <\/p>\n
\u201cThe system moves slowly, but your child doesn\u2019t have time to wait,\u201d Birch said. \u201cYou\u2019re the expert in your child\u2019s needs, and their voice when they don\u2019t have one. Keep fighting for the care they deserve, not just the care that\u2019s available.\u201d<\/p>\n
Overall, while families like Birch\u2019s can often feel invisible, especially as Lennox-Gastaut Syndrome is rare, misunderstood and relentless, she said their story shows that behind every person with this diagnosis there is a person who deserves to be able to live a good life and a family fighting for them. <\/p>\n
\u201cBehind every emergency room visit or medication change is a person who deserves dignity, safety and joy, and a family who is fighting every day to give them that,\u201d Birch said. \u201cVincent is so much more than his diagnosis, anyone that has met him can tell you that. He loves his community, the Tarp Skunks, his best friends \u2014 there are many \u2013, mowing Randy\u2019s yard, taking Uncle Sean to the court and making him a skunk. He\u2019s goofy and social and so full of life. He deserves a system that sees all of that too. I also hope more awareness leads to real solutions, not only for Vincent but for every family who is living in crisis with nowhere to turn.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Vincent Ognibene and his family are pictured at left during their recent trip to visit him ahead of…\n","protected":false},"author":2,"featured_media":82432,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[40587,9,24,55,54,56,27],"class_list":{"0":"post-82431","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-new-york-city","8":"tag-choosing-hope-local-mother-seeks-specialized-care-in-new-york-city-for-son","9":"tag-new-york","10":"tag-new-york-city","11":"tag-new-york-city-headlines","12":"tag-new-york-city-news","13":"tag-ny","14":"tag-top-stories"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/posts\/82431","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/comments?post=82431"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/posts\/82431\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/media\/82432"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/media?parent=82431"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/categories?post=82431"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ny\/wp-json\/wp\/v2\/tags?post=82431"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}