Welles Manson (left) and John Koch (right), both diagnosed with Down Syndrome, met through their mothers who co-found the Down Syndrome Advocacy Project of Maine. Credit: Credit: Courtesy of Erica Koch

MADAWASKA, Maine —  Inspired by their sons, two mothers have formed a non-profit organization advocating for and supplying secondary education scholarships to people with Down Syndrome.

Erica Koch of Litchfield, who graduated from Madawaska High School, is the vice president of the new organization Down Syndrome Advocacy Project of Maine. Koch and the group’s president, Cassie Manson of Bowdoin, formed it last summer and have just received 501c3 nonprofit status for the organization this year.

Babies with Down Syndrome have an extra chromosome, which changes how the child’s brain and body develop, and can cause both physical and mental challenges throughout growth into adulthood. Each year, one in 700 babies are born with Down Syndrome, and between 1979 and 2003, the number of babies born with it increased by 30 percent, according to the Center for Disease Control. March 21 is World Down Syndrome Day. Koch and Manson saw a need for some basic education about Down Syndrome that was not being fulfilled.

The newly formed charitable organization provides resources to new parents of children with this condition. It also promotes awareness, acceptance and inclusion for people with Down Syndrome.

In addition to providing resources for families needing information about their children’s diagnosis, the Down Syndrome Advocacy Project raises money for scholarships given to people with the condition who want to pursue higher education.

“Even though you have an intellectual disability, it doesn’t mean that you don’t deserve to be treated with respect or have the opportunity that typical children do in regards to secondary education,” Koch said.

Koch gave birth to her son John in 2018, knowing from an ultrasound during her pregnancy that at least part of his intestine had not formed correctly. But it was the first sign that her son might have Down Syndrome. When doctors officially diagnosed him, they also told Koch that John had a hole in his heart that would require surgery.

“We knew we were going to spend some time in the (Neonatal Intensive Care Unit),” Koch said. “That turned out to be 132 days in the NICU at Maine (Medical Center). Also included in that time was two weeks at Boston Children’s (Hospital) where he had open-heart surgery twice.”

At first, her son’s diagnosis of Down Syndrome weighed heavier on her than the heart surgery, Koch said. 

“I felt like, oh it’s heart surgery, no big deal, doctors do this all the time,” Koch said. “I just wasn’t informed at all about Down Syndrome. I knew what the words meant, but I didn’t know anyone who had Down Syndrome. I had no connection to it.” 

As John’s heart surgery came closer, Koch began connecting with other parents who had experience with Down Syndrome. Soon, her thought process flipped, Koch said. 

“I was informed and it wasn’t as scary,” Koch said. “It was more of the heart surgery — my little guy who’s 2months old is going to have heart surgery.” 

Through her postnatal experience of heart surgeries and educating herself on Down Syndrome, Koch said she met Cassie Manson after becoming involved with Maine Down Syndrome Network

Manson’s son Welles was the same age as John and had also been diagnosed with Down Syndrome. Manson was already running her own organization called All is Welles, which raises money for inclusion-based programs such as Special Olympics, Buddy Ball and Unified Sports programs. 

When the two women realized during their discussions that there was a need for resources to help new parents whose children were born with the condition, they began the Down Syndrome Advocacy Project.

Koch said that not having information about Down Syndrome was scarier than anything else she had experienced during and after her pregnancy.

“So that’s kind of why Cassie and I have got together to be able to help inform people and ease some of that concern,” Koch said. “Having someone to talk to that’s been through a similar situation helps take some of that fear away.” 

Koch said that she feels that speaking with other parents with a new diagnosis or to those in the neonatal intensive care unit dealing with similar situations to her own is her way of paying it forward for all the knowledge she gained after her pregnancy with John. 

“He’s a little trooper, that’s for sure. He’s inspired us to want to help others who may not know where to turn,” she said.