One family’s dream to honor their little boy’s memory and help other families of children battling kidney disease has been realized.
The Loy family, of Walcott and formerly of Ottumwa, received the news on Thursday, which, ironically, was National Kidney Day.
One of Alisha Loy’s coworkers checked their mailbox on Thursday, “and there was our nonprofit 501(c)3 approval,” Loy said.
The pieces of the TRIPP Foundation (Tackling Renal Insufficiencies Person by Person) began falling into place in October 2010, shortly before Tripp Loy’s kidney transplant.
Tripp lost his battle with kidney disease on June 27, and the Southeast Iowa Kidney Walk in Ottumwa in October raised awareness of the family’s struggle following his death and their efforts to begin a foundation in his honor.
Alisha and Aaron Loy, his mother and father, are already working with five families to coordinate services and identify their needs.
“We want to fill those gaps,” Alisha said. “Our enthusiasm and excitement has not diminished at all. We just keep seeing family after family and kid after kid.”
The foundation is working with the University of Iowa Hospitals and Clinics, where Tripp spent most of his nearly three years, on furthering the foundation’s efforts to help other children with kidney disease and their families “through coordination of support, crisis planning, resources, advocacy and financial assistance.”
Two teenagers approached the university to start a support group for children and families suffering from chronic kidney disease. The TRIPP Foundation was a perfect fit and the partners’ first support group will meet next month.
“[Alisha] recognized the need for more help for parents with kids with kidney disease,” said Karen Loy, Tripp’s grandmother.
The foundation’s focus is on continuing care.
“There’s a lack of resources,” Karen said. “Continuing care was a big part of her frustration, where she saw areas that could be improved.”
Once a child is released from the hospital, it’s the parents’ responsibility to figure out how they will continue medical treatment at home. Tripp was on continuous tube feedings, got reflux, would have to be suctioned and had medications streaming through his G-tube. He also caught aspiration pneumonia a couple of times.
“He had to have someone at his side all the time,” Karen said. “He had to be watched really closely. She had a nurse 40 hours a week, but other than that it was her and Aaron that learned to do all those things and be his advocate.”
Financial assistance will help families with anything from end-of-life expenses — “for those families that eventually lose a child like my husband and I did,” Alisha said — to travel and the cost of basically maintaining two households, “due to the amount of time these kids spend in the hospital.”
“After discharge, we want to step in and work with those families on identifying their needs,” Alisha said. “Anything from continuing to support them with pharmacy needs or supplies, all the way to if the family identifies a need for a therapy component.”
The purpose of the foundation is not to take over for the family, Alisha said.
“It’s to teach, educate and assist that family so they know that they can do this, and we’ll support them in areas they may need,” she said. “We’ll teach them how to be advocates for their kids, which could be on a smaller level ... all the way through looking at advocating on a more legislative level.”
A centralized database of information also needs to be created, she said.
“Some of the crazy things these kids are diagnosed with, you can’t find anybody with information on it,” she said. “We want to collect that information so these kids get the best opportunities for treatment.”
Crisis planning is another goal.
“You know it’s going to be a re-occurring crisis,” she said. “You hover within that state of pre-crisis.”
The Loy family always had a bag packed in the car and childcare lined up for Tripp’s twin, Rowdy, when Tripp had to be rushed to the hospital.
“As a parent, sometimes we have this vision that we’re supposed to be everything for our kids,” she said. “For us having twins and one having special needs, it’s going to demonstrate all the amazing things you’re really great at and it will point out every inadequacy you have.”
One of their goals is to have the first TRIPP Foundation fundraiser in October.
“We are just so thankful and grateful for all of the people that cared so much about us and allowed us to be able to function at a level that was successful for us,” Alisha said. “We got to enjoy every moment with our kids, but some families don’t get that dynamic because they either don’t know how to wrap those people around them, or those people are not there for them. We want them to have the same opportunities we had.”
Donations are being accepted and can be sent to:
P.O. Box 256
Walcott, IA 52773