New York 1 Story

New York 1 is a 24 hour news channel in New York City. It covers local news for the New York City area. For those of you who have never heard of it, it is very similar in nature to CNN Headline News but only covering New York stories. NY1 is part of Time Warner. If you are a fan of the show "How I Met Your Mother" the character of Robin works at a NY1 like station that the show loves to make fun of.

My wife works there as an Executive Producer and has been there for over 10 years. The people who work there have been amazing. They have been so incredibly supportive of my wife. I have stopped by her office enough times to say that it is a wonderful place to work and Melissa loves working there. I have to admit that I am a little jealous that she has such a wonderful work environment. These are the same people who are now running the fundraiser this Sunday (DON'T FORGET TO SUPPORT IT).

They decided that they would do a story on Dylan and his unique issues. Below I have copied the text of the story. I highly recommend that you go to their website to see the video of the story at: http://www.ny1.com/content/ny1_living/health/86511/parents-of-child-with-rare-genetic-disease-find-comfort-in-support-group/Default.aspx

"What would you do if someone in your family was faced with a medical condition that doctors had never seen before? For a member of the NY1 family, this was more than a hypothetical. NY1's Kafi Drexel filed the following report on the discovery by a NY1 employee that her son had a rare genetic disorder.

Usually by the age of three, most kids are walking, talking, and feeding themselves. Dylan Rabinovich cannot do any of those things.

Six weeks after he was born, his parents were told he has a medical condition, the likes that most people on this planet have never seen before.

"We first noticed different physical characteristics on him," said Dylan's mother, Melissa Rabinovich, an executive producer at NY1. "He has a depressed nasal bridge, a small chin, huge balls of extra skin on his ears and ear tags. He was also failure to thrive. He couldn't eat, so the Neonatal Intensive Care Unit team sent us to a geneticist right away."

The geneticist discovered that Dylan has a rare chromosome disorder called Emanuel Syndrome. In addition to not being able to walk or talk on his own, Emanuel Syndrome causes mental retardation, along with a myriad of unique medical challenges. So far, there are only about 200 cases documented worldwide.

"As a geneticist I am used to seeing rare conditions, but this is one of the exceedingly rare conditions," said Dr. Milen Velinov, a geneticist at the Institute for Basic Research in Developmental Disabilities. "And I can tell you, I haven't seen other case with this syndrome."
Because Dylan's condition is so rare, it makes getting the best care a challenge.

"Different health issues come up with Dylan everyday. He has water on the brain, a hole in his heart, hearing problems, vision problems, small kidneys and other gastrointestinal problems," said Rabinovich. "On top of that, we've had to navigate the system with this really disabled child that no one has ever heard of his condition."

The Rabinovichs were told Dylan would never live to see his first birthday, which they refused to accept. That led them to seek solace from the handful of other affected families they met on the internet.

"We found a mother from Canada online who was told more than a decade ago that her child was the only one living with this syndrome," Rabinovich said. "Refusing to believe that, she started an internet group to help support families. Thanks to her, we've survived the last almost three years."

"You have to have a team mentality in terms of supporting a kid who is very chronically ill with a lot of issues," explained pediatrician Dr. Janet Shen. "And, as a parent, I think having a parent support group can help alleviate a lot of stress from a lot of the unknown that might face you."One of the next goals for these families is to try to meet face-to-face, bringing together children and parents who share the common bond of raising children with virtually unknown diseases.

For more information on Emanuel Syndrome, go to http://www.c22c.org. "