Zion’s Army works to help parents of Down syndrome babies

Bobbi Sarmiento gets a kiss from her husband, Joshua, as the couple holds a photo of their late infant son, Zion Joe Sarmiento, who passed away on Oct. 8, 2021, as they pose for a photo at their Marion Oaks, Fla. home on Tuesday, Oct. 1, 2024. Zion was born with Down syndrome and was diagnosed with a complete AVSD heart defect. He had five open heart surgeries in 12 days and died when he was 3 months, 3 weeks and 3 days old. The Sarmiento’s started the “Zion’s Army” Foundation to remember their son and bring awareness and compassion to other families who are dealing with the same health conditions their son had. They will be holding a CrossFit event for the “Zion’s Army” Foundation on Saturday, Oct. 12 at 9 a.m. at Tier One CrossFit in Ocala. [Bruce Ackerman/Ocala Gazette] 2024.

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Posted October 2, 2024 | By Marian Rizzo, Correspondent

Josh and Bobbi Sarmiento literally held their breath for four months while their newborn baby fought for his life. Born on June 15, 2021, Zion Joe Sarmiento was diagnosed with Down syndrome and a congenital heart defect. Over the next four months, he endured five open heart surgeries, went into cardiac arrest, was placed on life support three times, and needed dialysis for kidney issues. After the fifth surgery, doctors said he would likely need open heart surgery but would not be ready until he was 3 years old. Despite their efforts to save Zion’s life, he passed away on Oct. 8, 2021.

The pastors of Ignite Ministries in Ocala, the Sarmientos had posted their son’s battle on Facebook and were surprised by the amazing response from complete strangers saying they would pray for Zion.

“We got testimonies from people about how Zion led them to the Lord,” Bobbi said. “I got a map and started charting where people were from. Then I got a globe. People in 48 countries were touched by his life and his story and what he was teaching us in the three or four months he was on this earth. I told my husband, ‘We have an army of people praying for him.’ So, we set up a website and called it Zion’s Army.”

On the one-year anniversary of Zion’s death the Sarmientos also organized a fundraiser called Zion’s Army Memorial Workout of the Day, bringing people together at gyms for a free fitness workout while raising awareness of Down syndrome and also generating donations so they could help other parents. The event caught on and went global.

This year, Zion’s Army Memorial Workout of the Day (WOD) is set for 9 a.m. Oct. 12 at Tier One CrossFit DBP (Driven By Purpose), 2500 NW 6th St., Suite 101, Ocala. In addition to working out together, participants will be able to light a candle in honor of a child who has died. Purchases of T-shirts and other donations will stay here in Ocala to help families in need, said Josh.

A self-proclaimed “CrossFit guy,” Josh found the perfect outlet for his grief when he organized the WOD events. He tied the workouts with specifics related to Zion’s battle.

“For 40 days he was in NICU, so we have 40 dumbbell snatches,” said Josh. “We have a 2021-meter row or run. That’s the year he was born. Each exercise and each round has a significant meaning. The beautiful thing about this workout is people do it all over the world at different CrossFit gyms. Some of them do it by Zoom. Some do the workout and put it on Facebook. People post their pictures doing a workout.”

October is National Down Syndrome Awareness Month, named in the 1980s by the National Down Syndrome Society. According to the Centers for Disease Control and Prevention, people with Down syndrome are born with an extra copy of chromosome 21, which can result in various physical and mental problems. Besides some noticeable differences, such as almond-shaped eyes, a short neck, and small ears, hands, and feet, some Down syndrome babies, like Zion, also are born with congenital heart defects.

Bobbi knows what it’s like to face seemingly insurmountable challenges. Though she had one son named Josiah, she suffered through several miscarriages, and then was told she wouldn’t be able to have more children. She awoke one night singing Clint Brown’s “Zion is calling me to a higher place of praise.”

“The Lord spoke to my spirit and said, ‘I will give you a son and you’re to call him Zion, and he will teach you about praise.’” Bobbi said. “Six weeks later, I found out I was pregnant.”

Though Josh is a licensed mental health counselor, he was not prepared to father a child with so many challenges.

“I’ll be honest, studying about this as a clinician, it still took me by surprise,” he said. “I heard about it and read about it, but when it hits home, it hits you differently. When you have to face it, you become personally involved. It took me by surprise, but it changed my life for the better. It gave me a better understanding of the Down syndrome world. It was a challenge and a journey we were willing to face, because we believe every baby is a gift from God.”

Because Zion’s Army has nonprofit 501(c)(3) status, the Sarmientos perform random acts of kindness. They purchase gifts for families of newborns, with a goal of 12 babies every month. And each year on Zion’s birthday they visit a local bakery and pay for a birthday cake that was ordered by the parents of other children. They leave a card and balloons to be delivered with each cake. Josiah Sarmiento, now 15, found an outlet for his own grief by getting involved, particularly when the newborn babies have siblings.

In addition to the workouts and social media contacts, the Sarmientos have communicated with state officials, and they lobbied in Washington, D.C., with the National Down Syndrome Society in an effort to bring awareness, rally support, and help change laws related to discrimination against people with disabilities.

“I believe God has given us a purpose for our pain,” said Josh. “When it comes to grief, losing our son, we can relate. We understand the different emotions people go through. There’s unexpected news, crises, an accident, disease—we’re able to understand and create a safe place for them. I would love to in the future continue to be a resource that would promote Down syndrome and help the parents with life skills and social skills through the professional resources that we have. My goal is to one day have all the CrossFit gyms doing Zion’s workout. It will unite the people knowing it’s for a good cause.”

To learn more, visit zionsarmy.net