OCALA, Fla. (WCJB) - An Ocala couple’s story is inspiring a North Central Florida congresswoman to help citizens with disabilities.
In June 2021, Bobbi and Joshua Sarmiento’s son Zion was born with Down Syndrome. He spent 40 days in the NICU and had five open heart surgeries in 12 days.
Doctors told his parents the baby needed a heart transplant, but since Zion had Down Syndrome, he was denied by three doctors.
“They came back later that day and said just after much deliberation that they decided they couldn’t waste a heart,” said Bobbi.
Zion passed away that October. The couple shared their story online to help families going through a similar situation, creating Zion’s Army.
They advocate for Down Syndrome, honor child loss, and support Congenital Heart Defect research.
“Zion’s life is now our mission and we didn’t realize what would come out of his life and how many lives he had touched,” said Bobbi.
The couple turned Zion’s Army into a nonprofit in April 2022. They sell shirts to purchase gifts for children with Down syndrome celebrating their first birthday.
They also distribute Random Acts of Kindness cards in honor of their son and plan an annual CrossFit workout event days after their son’s death.
“We like to see and try to implement in all that we can do more services not only for parents of children with Down Syndrome but also parents who have children with disabilities,” shared Zion’s father, Joshua.
Their story reached Congresswoman Kat Cammack, who is sponsoring the Charlotte Woodward Organ Transplant Discrimination Prevention Act.
“It is absolutely insane, egregious, that your healthcare is determined by a formula,” Cammack previously told TV20.
The bill would prohibit discrimination against people with disabilities who need an organ transplant.
“What we’re asking for is that they have the same chance at life as anyone else that meets the qualifications for a heart transplant,” said Bobbi.
Despite their loss, the couple says they want to help others.
“I go to the hospitals, I talk to the doctors with them, I hold their hand, but I just let them know that they’re not alone,” shared Bobbi. “Really what we needed in that time, we try to be for other people.”