Here in the Buffalo community, there are special programs and medical services provided to support parents, families, children, and adults living with Down Syndrome.
“I didn't know much about Down Syndrome before I had my son, so it was really an introduction into a whole new world,” reflected Emily Mondshein, executive director, Gigi’s Playhouse, Buffalo.
Wearing her ‘Got Inclusion?’ T-shirt, Mondshein recalls being pregnant with her son Paul and failing to get proper information about Down Syndrome.
“And we're told all kinds of discriminatory bias information about Down Syndrome and what an ugly future, in fact, that we had with our child,” Mondshein recalls.
Mondshein heads up Gigi’s Playhouse, a Down syndrome achievement center on Kenmore Avenue in the city, providing multiple programs to assist those living with Down Syndrome, including educational support, literacy, exercise, and socializing.
But her son, Paul, is now seven years old and a happy first grader in the Williamsville School District is thriving.
“It's the most common chromosomal abnormality with one in 800 births,” remarked pediatrician Dr. Ted Andrews.
Dr. Andrews teamed with Mondshien a couple of years ago to help create a Down Syndrome clinic here at the Robert Warner Rehabilitation Center at Oishei Children's Hospital to help other pregnant moms and families with children who have Down syndrome.
“The babies are where we really focus because early intervention is critical for these kids. The earlier they get intervention in the home, the better off they will do as they progress,” noted Dr. Andrews. “Early intervention is critical.”
Patient's at the Children's Hospital clinic range from newborn to 21 years old and comes once a year as a supplement to their regular pediatric visits.
“In the course of that meeting, though, we identify problems — behavioral problems — sleep problems — feeding problems — then those kids are invited back and we provide the therapies there for those things as well,” Dr. Andrews commented.
But for Dr. Andrews, his mission to help other families is also personal.
His 13-year-old daughter Grace has Down Syndrome. Dr. Andrews says he and his wife had no idea his daughter would have down syndrome until she was born.
“Both of us to this day will tell you — I couldn't imagine her not being born the way she was born,” Dr. Andrews reflected.
Dr. Andrews and Mondshein tell me they are hoping New York State lawmakers will pass the Down Syndrome Diagnosis Awareness bill , which would make sure medical providers don't discriminate, by providing "up-to-date" and "evidence-based information" to pregnant women and parents of infants with Down Syndrome.
“And now we have the medical community saying — 'what is going on. We need to get on board with this’ and they are in fact and it has been an amazing thing,” Mondshein declared.
“We see the moms as well, so if we know from our supportive colleagues, OBGYN, that mom is going to have a pregnancy with a child with Down syndrome, they can refer them to us and we are allowed to do one antenatal visit — we tell them what to expect,” Dr. Andrews said.
Down syndrome happens when there are three copies of the 21st chromosome, instead of two and that changes how a baby's brain develops.
The awareness day of March 21 was selected because it is 3/21, to match the chromosome and celebrate those with Down Syndrome.
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