Local organization celebrates children with Down Syndrome

By Ashley McNamee

March 1, 2013 Updated Mar 1, 2013 at 11:42 PM CDT

PEORIA, Ill. -- Every day new mothers learn their babies will be born with down syndrome.

A new blood test is making it easier for mothers to find that out early on in their pregnancy.

Meet Max, Sarah Pepino's 18-month-old son. He was born with down syndrome, a condition she knew he had before he arrived.

"I had some blood testing early in my pregnancy and he came back with a 1-in-5 chance he would have down syndrome," said Pepino.

Pepino wanted to know for sure so she joined the 2-percent of women who have what can be a risky and invasive procedure called amniocentesis.

"The doctor called me and told me over the phone that he did have down syndrome," she said. "I asked him where do we go from here and he gave me the information about termination."

The International Down Syndrome Coalition statistics show down syndrome births are down. Studies show anywhere from 74-percent to 92-percent of pregnancies are terminated after the mother learns of the diagnosis.

Today there is a new, less invasive test that can detect down syndrome in a fetus at 10-weeks just by using blood. Some worry it will only increase the rate of termination.

"That was never an option for us," she said. "Immediately I called the local down syndrome association and got as much information as possible and started from there."

That is something Meri Tucker with the Heart of Illinois Down Syndrome Association wishes happened more often.

"We have a mentoring program that connects them with a family member who has a child just older than theirs so they can talk through some things with someone who is a little farther along in that acceptance because they first get their diagnosis it is scary," said Tucker.

Pepino admits she was shocked at first, but she and her family can't imagine a life without Max.

"If people could get to know someone with down syndrome, it is different but it is good," she said. "It is not scary, it is not the end of the world. It does not define someone it is just part of who they are."

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