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Family Shares Their Story on World Down Syndrome Day
World Down Syndrome Day was Friday, March 21
Preston, with his older sister Kierstin, 6, and his parents Eric and Jennifer, have been visiting The Robert Warner, MD, Center for Children with Special Needs since Preston was born at Women & Children’s Hospital of Buffalo and then admitted for six weeks in the neonatal intensive care unit (NICU).
To see a YouTube video about Preston and his journey, go to http://youtu.be/tozn5eLZt5c
Traveling from Bradford, Pa., Jennifer was able to find the care she needed at Women & Children’s Hospital of Buffalo to deliver Preston. “Preston received top notch care and that is why we made the two hour drive to deliver him in Buffalo,” said Jennifer.
“I had two different nurses during labor and delivery. They may not remember me, but I will never forget their kindness and patience. Gail and Peg were their names,” she said. “Preston had wonderful care by his nurses, the NICU doctors, his cardiology team, Dr. Joseph Orie and Dr. Glenn Leonard, as well as his pediatric surgeon, Dr. Katherine Bass.”
“Having a child born with DS can be scary. There were so many unknowns and so much about Down syndrome that we were uneducated about. I came to terms with the fact that this is who he was and that who he was is not a bad thing! I truly accepted this gift we had been given and learned about all the wonderful support and services that are available to children with DS. Now we cannot even imagine not having DS as part of our lives. I can honestly say that even if I could take Down syndrome away, I would not! Preston is the happiest little guy around. Anyone who meets him can see the joy he radiates. He can rock that extra chromosome like nobody’s business,” stated Jennifer.
“I will admit Preston is the first person I actually knew with DS. I did not know what it really meant when we found out. I quickly learned that while it may take Preston and others with DS a bit longer to catch on to how to do something like walk, read and write, there is absolutely no reason why they cannot do those things. It just takes a little extra time and help, and Preston has plenty of both. We are going through life at Preston’s pace and enjoying every second of it.”
World Down Syndrome Day is celebrated throughout the world, and Jennifer is making sure that people know how wonderful Preston and others like him are, and how they can support and encourage all children with DS.
In their community, the Taylor family celebrated by sharing their story with their local paper and radio station, going on the radio for a “live line” show, talking to their daughter’s entire school about DS, hosting a balloon release with the kindergarten class, encouraging the area public schools to educate, and asking the entire community to wear blue and yellow, the colors representing DS.
Jennifer finished her story by stating, “I feel awareness leads to acceptance and who better to spread awareness but us! My message is that we are a whole lot more alike than we are different.”
Preston and his family were also recently featured as the January winner of the monthly Buffalo Baby Buffalo Sabres Facebook Photo Contest by Women & Children’s Hospital of Buffalo. A photo submitted for this contest of Preston with Sabretooth received more than 1,000 likes on the Women & Children’s Hospital of Buffalo Facebook page. To see, click here:
The Robert Warner, MD, Center for Children with Special Needs at Women & Children’s Hospital of Buffalo has been providing comprehensive rehabilitation services consisting of diagnostic, evaluative and therapeutic services to children in Western New York and surrounding areas with known or suspected disabilities. To learn more about the Robert Warner Center, please visit http://www.kaleidahealth.org/childrens/services/display.asp?s=625