The Edmond Sun

November 12, 2013

Benefit breakfast offered for fighting 4-year-old

James Coburn
The Edmond Sun

EDMOND — A 4-year-old Edmond boy is fighting for his life while he waits for a liver transplant.

A pancake breakfast benefit for Jaxon Saenz is set for 7:30-11:30 a.m. Saturday at the American Legion Hall, 101 E. 5th St. The cost is $5 per person with proceeds dedicated to Jaxon’s medical bills, said his grandmother, Rhonda Penick.

“Before his health began to decline, 4-year-old Jaxon was a normal, playful little boy, who was looking forward to starting pre-K,” Penick said. “He loved to play with his cousins, run, climb, play super heroes and ride his bike.”

Today, cirrhosis of the liver limits Jaxon’s playtime to sitting without exerting himself too much. Penick said her grandson wants to live a normal, healthy childhood.

Jaxon’s younger sister Shylee was born premature in March. So their parents Joey and Kacee Saenz were already facing costly medical bills related to her 10-day stay in a neonatal intensive care unit when they discovered Jaxon’s disease, Penick said.

Kacee gave up her work at a local daycare to care for Jaxon at home. Joey has worked as a Volvo mechanic and switched jobs a year ago to work at a company that handles monster trucks.

“The family is strong and thankful for the support of so many loved ones,” Penick said.

His mother learned something was wrong with Jaxon when Shylee was having a routine check-up two days after she left the hospital for home. While there, the doctor noticed Jaxon’s eyes had a yellow tint, a warning sign of jaundice caused by liver disease.

“After undergoing blood work and an ultrasound, the family was shocked to learn that their sweet boy was suffering from cirrhosis of the liver,” Penick said.

He is now under the care of the Integris Nazih Zuhdi Transplant Institute.

The average liver transplant costs approximately $575,000, but Jaxon’s insurance will only pay for 60 percent of the surgery, Penick said. The family has also learned that Medicaid can be used for secondary insurance.

Jaxon would also face additional medical costs for a lifetime of follow-up care and daily anti-rejection medications.

Children spend less time waiting for a liver transplant than adults, according to the Scientific Registry for Transplant Recipients. This is because a living donor may provide part of their healthy liver for a child, according to Children’s Healthcare of Atlanta.

“Please keep him and our family in your prayers. We are still praying for a miracle,” Penick said.

Visit to make a tax-deductible donation to the National Foundation for Transplants in Jaxon’s name.

Liver Transplant Survival Rate Statistics:

• 91 percent 1-year adult liver transplant survival rate

• 82 percent 1-year pediatric liver transplant survival rate

• 84 percent 3-year adult liver transplant survival rate

• 76 percent 3-year pediatric liver transplant survival rate

• Average length of stay across all transplants of 6 days. 4 days less than the national average

source: Integris Nazih Zuhdi Transplant Institute