Death of Marion couple’s son becomes moment for advocacy

CEDAR RAPIDS - After the death of their young son, a Marion couple is turning their grief into an effort to help others experiencing the same struggles they faced.

Miles Yindra Herbrand, 4, who loved to blow kisses and turn lights on and off, died Aug. 23 due to SUDEP - the sudden, unexpected death of someone with epilepsy.

But instead of accepting flowers or any memorial gifts, his parents Justin Herbrand and Laura Yindra are asking donations be made to an upcoming 5-kilometer race that is raising funds to help battle the chronic condition that affected their son.

The fourth annual Dash to Bash Epilepsy takes place beginning at 8 a.m. Saturday at the National Czech and Slovak Museum, 1400 Inspiration Place SW, Cedar Rapids. The event raises funds for the Epilepsy Foundation, a national nonprofit that raises awareness of the condition.

'We are honored they are taking this tragedy and channeling their love for Miles into supporting this Foundation, said Dale Todd, Dash to Bash Epilepsy organizer.

For families like Herbrand and Yindra, the Epilepsy Foundation offers necessary help and support to families.

'They really try and support us in advocating for our kids,” Yindra said.

According to the Epilepsy Foundation, epilepsy affects about 3 million people in the United States, making it the fourth most common neurological disorder in the country.

Miles was diagnosed with epilepsy in 2015 - the result of a condition he was born with called Snyder-Robinson syndrome. For Miles, the syndrome caused low muscle tone and easily broken bones, as well as seizures.

Yindra said her son suffered from myoclonic seizures every day, or a seizure that causes a brief, shocklike jerk of a muscle or group of muscles. The seizures were managed with the help of medication, until a major event on Aug. 15.

He was transported to the hospital, and Miles died about a week later as a result of what doctors called a low oxygen event.

'He was a laid back kid,” Herbrand said. 'He had that infectious smile and laugh.”

By attending the annual Iowa Seizure Smart Conference put on by the Foundation, the couple received additional support and education after their son was diagnosed.

'They talk about different seizure drugs, the side effects, the benefits,” Yindra said. 'That was one of their things, here are the different tools you can do to prevent a death like Miles' death.”

They also joined a Cedar Rapids-based support group for families dealing with epilepsy.

'Every time I would go to the support group, I would come out of it thinking, ‘Man, for Miles having epilepsy, he has it easy for what some of the other people have to go through,' ” Herbrand said.

Because of this experience, Herbrand and Yindra hope to continue supporting organizations like the Epilepsy Foundation and help other families who may be facing a similar situation.

Saturday's race is dubbed the Trashmore 5k, since its route takes participants up the 208-foot climb to the top of Mount Trashmore in Czech Village. Due to construction on Mount Trashmore, Todd said people can expect some slight course changes this year.

'Road construction in the vicinity has caused some slight detours but the experience will be the same, the most beautiful view of Cedar Rapids that one can find,” he said.

For more information on the Dash to Bash Epilepsy, go to trashmore5k.com.

l Comments: (319) 368-8536; michaela.ramm@thegazette.com

If You Go

- What: Dash to Bash Epilepsy 5k

- When: 8 a.m. Saturday

- Where: Race starts at National Czech and Slovak Museum, 1400 Inspiration Place SW, Cedar Rapids.

- Online registration: Through Thursday at trashmore5k.com. Cost is $35 for adults, $20 for those age 18 and younger.

- Race day registration: Available at the museum for $10 more per racer.

- Packet pickup: 5 to 7 p.m. Friday at the museum.