Tripp Loy blew one last big kiss to his mother on June 27.
Tripp would have turned 3 on July 29 alongside his twin brother, Rowdy.
Alisha Loy, along with her husband, Aaron, found out during their 20-week ultrasound that one of their twins, Tripp, had kidney disease, though they didn’t know its severity until he was born.
While kidney disease can run in a family, that wasn’t the case for Tripp. He had a genetic condition called Kabuki Syndrome, part of which involved mid-line issues, including heart disease and an auto-immune condition, along with his kidney disease.
“For him, that genetics wasn’t about Aaron and I,” Alisha said. “It was a one-time, spontaneous, sporadic mutation. It was just a fluke.”
Tripp and Rowdy were named after Olympic swimmers Tripp Schwenk and Rowdy Gaines, since Alisha and Aaron met through swim team in high school.
Gaines, a three-time Olympic gold medalist, covered the 2008 and 2012 Summer Olympics. During blood work for the 1996 Summer Olympics, Schwenk found out he was in kidney failure. Schwenk received a kidney transplant after competing — and winning gold and silver medals — in that year’s Olympics.
“We had the names picked out before they were born,” Alisha said. “After we picked out the names we did find out that Tripp had kidney disease. It was pure coincidence. We found out at the 20-week ultrasound.”
Tripp spent half of his nearly three years at the University of Iowa Children’s Hospital.
“They are the other half of our family,” Alisha said.
Tripp was the mayor of pediatrics, Alisha said, always waving and blowing kisses to every person on every floor.
“Everybody knew Tripp, housekeeping, dietary,” Alisha said. “He was on a feeding tube, he didn’t eat, but the dietary staff knew him ‘cause he’d blow them kisses.”
Tripp says goodbye
Tripp came home this June after three weeks in the hospital. Karen Loy, Tripp’s grandmother, had Rowdy at her house to help out Alisha and Aaron, and was planning to take him back to his parents on Wednesday, June 27.
At around 5 p.m. the day before, Aaron called Karen, saying they were taking Tripp back to the hospital since there was something wrong with his stools.
“[Aaron] called again about 9 [p.m.] and he said Tripp had spiked a fever and he was having really bad abdominal pain,” Karen said.
When they arrived at the hospital, they put Tripp on the floor and he walked to his room, blowing kisses the entire way.
Eventually, Tripp’s condition deteriorated and an X-ray showed pneumatosis, which can cause necrotizing enterocolitis, a condition in which portions of the bowel experience tissue death.
“They put him on IV antibiotics and kept him comfortable through the night,” Karen said.
Between 3 and 4 a.m. on June 27, Alisha said Tripp was comfortable, so she laid down in the crib with him and Aaron went to the lounge to sleep. But at 5 a.m., Tripp woke up.
“He looked at mommy and he blew her a kiss, he signed that he wanted his socks and shoes and then he reached his arms up,” Karen said. “Then his cry changed to a high-pitched cry — Alisha said, ‘I knew it wasn’t him anymore’ — and she went to get Aaron. When they came back they were doing CPR on him.”
Tripp died at 5:41 a.m. June 27, his “Heaven day,” as his family calls it.
“He woke up enough to tell mommy goodbye,” Karen said.
Coping with the loss of his brother
Rowdy understands that Tripp is gone. He comes to his parents whenever he feels sad or when he misses Tripp and wants to look at pictures.
“The hospital did a great job of talking to us about how do we help him, how do we talk to him,” Alisha said.
During the car ride to the kidney walk Saturday morning, Rowdy told his grandmother about a trip to the zoo the other day.
“We saw giraffes, and goats — and goats made brother laugh,” Rowdy said.
At Tripp’s funeral, instead of flowers the family asked for balloons, which they released into the sky.
“So we write messages on balloons when [Rowdy] wants to talk to brother and we send them to Heaven,” Alisha said. “We really watch him closely to make sure we don’t need to bring in outside services for him, but right now he’s really doing well.”
Family moves forward, honors Tripp through foundation
Today, there is no cure for kidney disease, aside from transplants.
Once a person gets to the point where dialysis is required, at some point he or she will likely need a kidney transplant.
“That’s why live organ donation is such a huge, important piece of this,” Alisha said. “I gave a kidney. I’m still here. You only need one.”
On Saturday, the Southeast Iowa Kidney Walk surpassed its $5,000 goal, despite rainy weather.
The Loys, of Walcott and originally of Ottumwa, have participated in the National Kidney Walk in eastern Iowa for the last two years. This year, they heard from several people that Jami Kaelin and Kristin Wilson were organizing the Southeast Iowa Kidney Walk in Ottumwa. On Saturday, nearly 20 people turned out for “Team Tripp,” organized by Terry Loy, Tripp’s aunt, and her coworker, Lori Rushman.
At the 2012 Eastern Iowa Walk, a group of more than 50 came out with Team Tripp, which included family as well as the nephrology team at the University of Iowa.
“They’re our family,” Alisha said. “They’re Tripp’s family.”
She said her role at kidney walks now is to make them children-friendly.
“I think a lot of times people don’t recognize that kidney disease affects people of all ages,” Alisha said.
The National Kidney Foundation focuses on adults, Alisha said, so there is a need for attention on children and families.
“It’s that holistic approach, especially when you’re dealing with children,” Alisha said. “They’re so dependent upon other people in their life. It’s not like they get to choose whether they take that med. Somebody else has to draw it up, somebody else has to give it to them, somebody has to time it, to know when it’s given.”
More attention also needs to be paid to the trauma children and their siblings endure, Alisha said.
“Every time they get poked, every time they get stuck, every time mom or dad rushes out in the middle of the night and that kid wakes up and thinks, ‘Where’s my brother? Where’s my mom?’” Alisha said.
Watching paramedics rush into the house can also be traumatic, Karen said.
“We’re focusing on how do we lessen that,” Alisha said. “How do we create plans for them to minimize that trauma and wrap services around them to get the support that they need.”
This November, The TRIPP Foundation will file for tax-exemption, securing their status as a non-profit organization. Alisha hopes the organization will help families with price planning, case coordination, advocacy, financial support and more.
“We hope to pick up where the hospital leaves off with discharge,” Alisha said.
The Southeast Iowa Kidney Walk provides the opportunity for another partner, Alisha said, which will help the foundation span throughout Iowa.
“There’s all kinds of people all over the place with kidney disease,” she said. “It’s not just one child.”