Parents seek answers for son’s sudden unexplained death to help others

STARK COUNTY — James Ward had the biggest smile.

The fourth-grader at Strausser Elementary School in Jackson Local Schools was a healthy 10-year-old who played football, basketball and lacrosse.

He wanted to be an architect when he grew up and loved playing with his Legos.

But on the morning of March 12, 2019, James was found dead when his mother went to wake him up for school.

His final death certificate listed his death as a seizure, but only because James had some minor seizure activity the summer before his death. But he had no evidence of a seizure at the time of his death, his parents said. For the first six months after his death, the cause of death was listed as a strep infection, which went to his heart.

“There are no findings; nobody knows what happened to our little boy,” said Joanna Ward.

James’ death is a Sudden Unexplained Death in Childhood, or SUDC for short, a category of death for children 11 months to 18 years of age. It is similar to Sudden Infant Death Syndrome, or SIDS, which is typically death in an infant before age 1.

The morning of March 12, 2019 was a normal Tuesday morning, said Joanna Ward. She was getting her four kids up and ready for school. After she woke up the younger kids, she went downstairs to James’ basement room to wake up “Jamesey” as she called him.

“He was laying face down and I could tell the way he looked — I put my kiddos down and immediately called 911. They told me to pick him up and how to do chest compressions,” said Ward.

When the paramedics arrived, they looked at James, “pulled me off him, scooped up our little boy and put him in the ambulance.”

Joanna called her ex-husband Ryan.

“I remember screaming and crying and then I called my mom. Those were the only two phone calls I made,” she said.

A neighbor stayed with the Wards’ three younger kids and Joanna met Ryan at Aultman Hospital.

By the time James’ parents arrived at the hospital, they said they knew he was gone.

First responders later told Joanna Ward that they would have called the death at the house for an adult, but “they knew for me and my kiddos in the house” they needed to try, she said.

Two days before his death, James had just finished an antibiotic for strep throat. For six months, the family was told James died of that strep infection, which went to his heart. They had their other three kids do EKGS to check their hearts. But when the final autopsy report came back, it listed a seizure as the cause of death, which still dumbfounds James’ parents.

Testing did not find any seizure activity and no virus or bacteria were found in his heart or brain, they said.

“He was a completely healthy little boy,” his mom said.

The Friday before his death, Ryan Ward took James to his first concert with his sister, Kayleigh, who was 8 at the time.

“I have the cutest video of him,” said Ryan.

Ryan and Joanna said their last good memories of their son is what keeps them going.

Ryan had taken James on a father-son weekend at an indoor BMX bike park four weeks before his death.

“It was just a time where it was bonding time for us,” said Ryan. “He was 10, but you could talk to him about life.”

“He had such an understanding of things. When I think of myself when I was 10, his intelligence level and understanding was just so great.”

Joanna Ward remembers fondly her last night with her son.

“We danced in the living room. I tried playing Fortnight with him but he wouldn’t let me hold the controller. When it was time for bed, I tucked him into bed and prayed with him and gave him kisses. As I was walking out of his room, he said ‘Mom, one more hug.’ I gave him that one more hug,” Joanna said.

After James’ death, his parents heard even more stories about his kind and compassionate nature.

James helped with something called Polar Bear Helpers at school. He helped third graders and one day he wrote “You Matter” on the board for the students.

“That’s been our slogan,” said Joanna Ward. “Those are his words he’s left behind.”

The family also used #SmileLikeJames as they and others shared stories about James after his death, including on a Facebook group with the same name.

Ryan wrote a song, “Not With Me” with a friend and released it on music platforms in March before the first anniversary of James’ death.

The Wards have connected with a national nonprofit organization, the SUDC Foundation, which is working to promote awareness, advocate for research and provide support for those affected by sudden unexplained death in childhood.

“SUDC is a category of death that eludes science today,” said Laura Gould Crandall, foundation president. “It is probably a group of children who died from different causes and via research, we’re hoping we can identify them in order to explain what they are and have clinical medicine help us treat them and prevent these deaths from occurring in other children.”

According to the data from the Centers for Disease Control, about 400 children every year between 1 and 18 years die suddenly without explanation. The majority are toddlers, but some are older, like James Ward, Crandall said.

The organization started in 2014, but a registry for families who have experienced sudden unexplained death in a child has been gathering information for years before that and several parties combined to start the foundation.

While more than $500 million has been spent by the National Institutes of Health to research SIDS over the last few decades, there have been no targeted grants to explain SUDC, said Crandall.

The group has an online petition to try to convince the NIH to provide research funding for SUDC. (www.sudc.org)

The group has several goals. A group of researchers from New York University, Columbia, Mayo Clinic and pathologists across the country are asking families to enroll in the registry and research collaborative, which will review the child’s death, perform a genetic analysis on a sample from an autopsy, study the risks involved in the unexplained deaths and take blood samples from parents to potentially identify risks in other family members.

The foundation also offers bereavement and advocacy services, peer support and DNA banking to provide additional opportunities for research.

Samples from James Ward are at the DNA bank to be used in the study and Ryan Ward said he and Joanna plan to donate samples, but the COVID-19 pandemic has caused some delays.

It has been 22 years since Crandall’s 15-month-old daughter died of unexplained reasons.

“I was shocked with everything including the lack of awareness and research going on.”

Crandall said she’s glad there are families like “the “Wards who take their grief and try to turn it into something positive by giving other people hope, raising funds for research and pushing for advocacy.”

They’re “trying to make the future a brighter place for kids through their tragedy. That’s a very meaningful way of handling something like this; it helps soothe your soul when you are helping someone else through this,” said Crandall.

Waves of grief overcome Joanna Ward at times, but she also has joy in remembering her son and looking at the faces of her other kids: Kaylee, now 10; Rylee, 5, and Jackson, 3. James would have turned 12 June 17.

“I feel our son. I feel him in everything. I feel him in the sun, the wind. I feel him. He amazes me with his beauty,” Joanna said.

“I say this to people all the time: As parents we can only hope we leave a legacy for our children, but we have the very rare opportunity to carry our son’s beautiful legacy. I choose to do so with dignity and grace and live and smile and remember him and talk about him. I feel most alive when I talk about him. To be his mama, has been an honor.”

Beacon Journal consumer columnist and medical reporter Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/?BettyLinFisherABJ and see all her stories at www.beaconjournal.com/?topics/?linfisher.

CREDIT: BY BETTY LINFISHER AKRON BEACON JOURNAL