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2 moms of Down syndrome babies born during pandemic join forces to fund charity

News Tribune - 9/17/2021

Sep. 16—Brooke Brown thought she knew teaching.

After all, she was chosen as the 2021 Washington State Teacher of the Year last year for her work as a high school teacher in the Franklin Pierce School District.

Then she gave birth to her baby boy, David, who has Down syndrome, during the pandemic.

"I know I was just Teacher of the Year, but he is the best teacher," Brown said of her son, who is now a 1-year-old

Down syndrome occurs when a baby is born with an extra chromosome, affecting body and brain development. It can cause mental and physical challenges for the baby.

Each year, about 6,000 babies are born with Down syndrome in the United States, or about 1 in every 700 babies, according to the Centers for Disease Control and Prevention.

Brown and Alisha Vilela, another Pierce County mom who had a son with Down syndrome during the pandemic, want to help other families like them.

Together, they've put together the first-ever Buddy Walk in Pierce County. The fundraiser, sponsored by the National Down Syndrome Society, is scheduled for 10 a.m. Saturday. It is an effort to raise money to create Pierce County's first resource center for its Down Syndrome community, with resources like job training, therapy and other support. People can register through Friday night at ds-stride.org/piercecountybuddywalk.

Already, the event has raised more than $30,000 towards resources helping people with Down syndrome and their families. The hope is to eventually raise $150,000 for the center.

For both Brown and Vilela, giving birth to a child diagnosed with Down syndrome was a lonely experience.

Brown said everything went well during her pregnancy despite the pandemic, but about a week before David was born, his stress testing came back abnormal.

David was born a few weeks early in July 2020. After David was born, doctors recommended testing for Down syndrome, and the diagnosis came about a week later.

"I was devastated. You always pray for a healthy baby, and he is healthy, but I really struggled," Brown said. "My biggest concern was for him: Was he going to have a good life? Was he going to have joy?"

Brown, who has three other children, said she experienced postpartum depression for the first time.

"I've never experienced that before and I think it was elevated, in the pandemic," she said.

Brown said she was able to come out of the fog after connecting with other parents through the Down Syndrome Diagnosis Network, or DSDN. Brown said she realized how ableism, which is defined as prejudice against people with disabilities, is rooted in society.

"I can tell you, he is joy," Brown said of her son. "He's a beautiful reminder to just enjoy today."

Vilela's experience was different than Brown's. She found out about her son's diagnosis when she was pregnant — specifically, the day schools shut down in March 2020 due to the COVID-19 pandemic.

"COVID definitely made it very isolating, in general," Vilela said.

Four months after her son, Cristiano, who goes by Tino, was born, he had to undergo open-heart surgery and overcame heart failure later that year. She remembered having to be alone in a room because of the pandemic rules.

"It was the loneliest period of my life and the hardest thing I've probably ever gone through," Vilela said.

Vilela, who also lives in the Franklin Pierce School District, met Brown through an online support group. They hit it off immediately.

"I think we're both thinking about our sons as young men, as adults, and how we can set them up for success," Brown said.

Eager to help other families like them, they started researching Buddy Walk events, only to find that Pierce County had never had one. They decided in June to take the plunge and plan one themselves for Sept. 18 — Tino's birthday.

"If there's something I can do to help any other mom or dad going through this, I would do anything," Vilela said. "I think it's important for any family going through this to know they're not alone."

So far, 500 people have registered for the event.

"We thought this was going to be small, just have some fun with it — and it has just blown up," Vilela said.

"This has been a difficult year for all of us, and I think the Buddy Walk could be something people can get excited about and rally around," Brown said.

Brown and Vilela hope the event can also inform people about Down syndrome and the resiliency of the people who have it.

"My son has helped me grow in ways I didn't know that I needed to grow," Brown said. "So I think Down syndrome has been a gift for our family."

About the event

What: Pierce County Buddy Walk

When: 10 a.m. to 1 p.m. Saturday, Sept. 18

Where: Franklin Pierce High School Stadium, 11002 18th Ave. E., Tacoma

Registration: People can register as a walk participant for $10 at ds-stride.org/piercecountybuddywalk. Registration closes at end of day Friday. Donations can also be made on the website.

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