At 2 years old Jake Peña was fighting for his life, in desperate need of a liver transplant that he could not get in Arizona. One big move and five years later the Pena family is back in Ahwatukee Foothills, close to family and friends, and now with a new appreciation for organ donation.
“Before my son was sick I never really thought about it,” said Stephanie Peña, Jake’s mom. “I always heard about donating organs, but never thought much about it until of course it happens to you.”
It did happen to Stephanie. Her youngest child, the third boy in the family, was sick right from the beginning. He was delayed in all his milestones, jaundiced, and his skin was constantly itchy.
At 2 years old doctors agreed, he would need a new liver. The bad news was the Peña’s insurance would not cover the procedure if it was done in Arizona. The Peña family reached out to the public for help and received a flood of emails, prayers, and meals, but no easy solution to their problem. They decided to move.
“It was really frustrating,” Stephanie said. “We knew they did liver transplants here, but to know our insurance would cover a transplant but not in Arizona was devastating. When you have a sick kid you rely on help from your family and your friends and we had to pick up, move a dying baby to another state with no help, no family, no anything. That was really hard.”
Jake waited a year on the transplant waiting list until he received his transplant. All the family knows about the donor was it was a young child. Jake spent two months in the hospital and then was in and out for over a year as his body adjusted to a new liver and overcame some complications. Now that Jake is healthy, has caught up to his peers and hasn’t had any complications for some time, the family has decided to move back to Ahwatukee.
“Sometimes it’s weird because I see him like this, today, and I remember him so sick,” Stephanie said. “Just seeing how the transplant transformed his life from a dying, suffering little toddler to a completely healthy, functioning, normal little boy is amazing.”
The family still has some struggles ahead of them. Jake, though he looks perfectly normal and healthy, is still in need of some speech and physical therapy to help rebuild muscles his disease damaged and the family’s insurance won’t cover those therapies in Arizona. Stephanie said she’s searching for an affordable solution, but she hasn’t found one yet. Out of pocket, the therapy Jake needs would cost about $2,000 a month. Still, the family is grateful for the support they’ve received so far.
“When somebody receives a new organ that affects everybody,” Stephanie said. “It affects siblings, the parents, the friends, the family. It’s devastating watching someone become so sick. Everything in life just pauses and you live in this nightmare until you get the organ. Sometimes you don’t get it in time.”
October is Liver Awareness Month. During October the Red Cross encourages eligible donors to give blood to support patients undergoing liver and other types of transplants. For a list of blood drives scheduled near you download the new Red Cross Blood Donor App or visit redcrossblood.org. To join the Donor Registry and learn more about organ donation, visit donatelifeaz.org.
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