Couple are advocates for Down syndrome in honor of daughter

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NORWALK, Conn. (AP) — Since the birth of their 14-month-old daughter Charlotte, who was born with Down Syndrome, John and Lisa Thygerson are on a mission to not only help their daughter reach her full potential, but also to actively raise awareness and advocate for those with Down syndrome.

During a period that the couple described as a time of soul-searching, several months into Lisa Thygerson's 2014 pregnancy she and John received confirmation that Charlotte, their second child, had Down syndrome.

"I can vividly remember the day, (of diagnosis)," John, a Norwalk attorney, said. "I was in New London court and Lisa called me crying because the diagnosis of Down syndrome was confirmed. It was an emotional roller coaster."

Their imaginations about the implications of having a child with Down syndrome became their "own worst enemy."

"It's a traumatic diagnosis for a mother, but it makes or breaks you," Lisa said. "I am so much stronger because of Charlotte and she has enriched our lives in so many ways."

After receiving Charlotte's diagnosis, the Thygersons said that they dove into extensive research and joined support groups.

"The question from the Ob-Gyn then comes up about whether or not we wanted to terminate the pregnancy," John said. "The doctors seemed surprised because we stood out as a couple who didn't elect to. We have a very strong marriage and we knew that we were strong enough."

They joined a support group called 21 Strong for families of children with Down syndrome.

"Nobody understands what a mother goes through when she receives confirmation of a diagnosis," Lisa said. "Nobody really gets the emotional roller coaster."

Down syndrome occurs when some or all of a person's cells have an extra full or partial chromosome 21. In Charlotte's case, all of her cells have an extra copy of chromosome 21.

"Charlotte's diagnosis does not define who she is, instead it is a part of who she is. However, there are many challenges that our family has ahead of us and that Charlotte will face in her life," John said.

Since receiving Charlotte's diagnosis prenatally, Lisa and John have become involved with various organizations, including the National Down Syndrome Society (NDSS) and the The Connecticut Down Syndrome Congress.

NDSS's mission is to increase awareness about Down syndrome to help create a better quality of life and fewer challenges to children and their families. CDSC is an advocacy and educational organization which provides support and connects families, as well as providing training and workshops to families and professionals.

"We thought a good way to help with our new adventure would be to participate last year in the NDSS Buddy Walk -- we are Charlotte's Angels," Lisa said. "The goal of CDSC is to raise awareness and to raise money for research."

The Buddy Walk celebrates Down Syndrome Awareness Month, which is in October.

In addition to promoting acceptance and inclusion, the Buddy Walk raises funds for local programs and services as well as national advocacy initiatives. In 2011, more than $11.2 million was raised nationwide.

"Last year we created a team of 25 people for the Buddy Walk," Lisa said. "It was low-key and we hope to do more this year. We welcome people to join us at the Walk."

"I was still processing this time last year, and was a little nervous about going to the Walk," John said. "There is a great range of abilities with this. I thought I would encounter the experience of seeing my daughter in other children there. But it was liberating, and dispelled many of my fears. It's heartwarming to see how much good there is in the world."

Charlotte, a loveable 14-month-old with a ready smile, has a strong attachment to her older sister, 7-year-old Alexandra, and the feelings are mutual.

"The first person she wants to hug in the morning is Alexandra," John said.

What does Alexandra love most about having a little sister?

"Everything!" she said.

"People have said to us, 'I'm sorry,' and what I respond is you don't need to be sorry," John said. "We know there are challenges, but we are happy."


Information from: The Hour,

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