Ethan Griggs of Siloam Springs is not quite 2 years old, but he needs a new kidney.
The good news is the toddler's dad, Capt. Zac Griggs, who has served as a firefighter and paramedic for the Siloam Springs Fire Department for the past six years, is a match. Surgery for the transplant from father to son is scheduled for Nov. 12, according to Heidi Duhachek, spokesperson for the EthanStrong Campaign, which is helping raise money for the family's expenses. The campaign, organized through the Children's Organ Transplant Association (COTA), kicked off on Saturday.
Meanwhile, Ethan's mom Jennifer Griggs is due to give birth to the couple's second child this month, Duhachek said.
Ethan was a healthy baby for his first year of life until November 2019, at age 13 months, he went into septic shock, which caused cardiac arrest, a colostomy and multiple organ failure, according to his story, posted on his COTA web page.
Ethan and his parents spent the first few months of his illness at Arkansas Children's Hospital in Little Rock before he was medically flown to Omaha, Neb., for further treatment. During his time in Nebraska, Ethan was in the intestinal rehab program and the remainder of his intestines began working again. His life improved, with his liver healing completely in March, and he was discharged in February to continue out-patient dialysis in Arkansas, the page states.
Unfortunately, the only pediatric dialysis unit in Arkansas is at Arkansas Children's Hospital in Little Rock, the page states. At first, the Griggs family found a place to stay at Glory House Foundation, but with Zac traveling for work, Jennifer pregnant and a sick toddler, all while away from their support system, they decided to move back to Siloam Springs and commute to Little Rock three days a week for dialysis, the page states. Gas alone for the trips costs $400 a month.
In August, Ethan and Zac's transplant evaluation was completed and Ethan was approved to be placed on the transplant list while Zac was approved as a match, the page states.
"We were excited because it almost seems like there is a little bit of light at the end of a tunnel," Zac said.
When Zac found out his son needed a new kidney, he knew right away he wanted to donate, he said. Typically, once a patient is on a transplant list, there is a three to five year wait before they receive an organ unless a family member is a match, he said.
The family is excited but also a little scared as the transplant is becoming a reality with surgery scheduled in the near future, Zac said.
"As a parent, you want what's best for your child," he said. "We were out of options and transplant is the best option."
A transplant will hopefully allow Ethan's body to operate as close as possible to naturally, rather than to be hooked up to a dialysis machine three times a week, he said.
Ethan will spend two weeks in the hospital for the transplant and the Griggs family will need to spend at least six to eight weeks in the Omaha area, during both Thanksgiving and Christmas, Jennifer said.
Ethan will continue to need medical support throughout his life, his parents said. Kidney failure affects the taste buds, so patients stop eating and lose weight, his parents said. Ethan is currently fed formula through a nasogastric tub. His parents are hopeful that with speech therapy and continued work, he will be able to eat by mouth, Jennifer said.
Ethan will also need anti-rejection medicines for the rest of his life, at an estimated cost of up to $2,000 a month, Jennifer said. Pediatric patients are expected to keep a kidney for 10 to 15 years, so at some point in his life he will probably need another transplant, she said.
Jennifer said the couple has learned a lot about living organ donation through the process. She hopes their experience will raise awareness and educate people about the possibility of organ donation to save someone's life.
Even though she wasn't able to donate to Ethan because of her pregnancy, Jennifer went down to the Department of Motor Vehicles to register as an organ donor, she said.
The fire department family, community and family members have come together to support the Griggs, starting when Ethan was first admitted to the hospital last November, Zac and Jennifer said. People have helped out however they could, from offering to mow the family's yard to keeping Ethan on their prayer list, they said.
"I'm thankful that a lot of people are willing to come together to pray for someone they don't know, to help," Jennifer said. "We feel blessed and loved."
The fundraising campaign, which has a goal of $40,000, was officially kicked-off on Sept. 12 and will continue through Sept. 24 because the number 12 is special to Jennifer and Zac, Duhachek said. Ethan will celebrate his second birthday on Oct. 12 and his transplant is scheduled exactly one month later, she said. The family will need to make preparations to make sure their bills are taken care of as they make sure someone is available to take care of Zac post-surgery while Jennifer is in the hospital with Ethan, she said.
As part of the campaign, Duhacheck asked people to make contributions to the campaign in multiples of $12, whether it is $12, $24 or $144, she said.
"Any amount will make a big difference and will help ease the financial burden on the family," she said.
COTA helps children and young adults who need a life-saving transplant with fundraising and family support, according to the organization's website. One-hundred percent of contributions made through the nonprofit help meet transplant-related expenses and are tax deductible, it states. Money donated will go into an account for Ethan that he can use for the rest of his life, Duhacheck said.
More information is available at cota.org/campaigns/COTAforEthanStrong.
