CRANBERRY TWP — This April, which is National Donate Life Month, has special meaning for Sarah and Tony Vargas of Cranberry Township.

Since their 9-year-old daughter Rosie has had two liver transplants — the first when she was only 9 months old — they are well aware of the importance of people making a decision to be a donor.

Sarah Vargas said her daughter had to have her first transplant because Rosie has maple syrup urine disease (MSUD), a metabolic disorder so named for the presence of sweet-smelling urine, similar to maple syrup, when the patient goes into metabolic crisis.

Vargas said, “We found out when she was a newborn. It was part of the newborn screening.

“It was 1-in-200,000 chance. Both parents had to be carriers, and even then it’s recessive,” she said. “If untreated it could lead to comas, strokes or death. She was one of the youngest recipients.”

Vargas said, “She had her first transplant at 9 months because of MSUD. She had the second transplant at 4 years of age due to chronic rejection.

“The first one was a living donor, who was Rosie’s dad’s cousin; and the second was from a deceased donor, a 21-year-old male from central Pennsylvania,” she said.

Vargas said because her daughter had medical complications from her first transplant she had to be slated for a second liver transplant.

“She was on the wait list for over two years because there are not enough organ donors,” she said.

But since the second transplant, Rosie has improved.

“She’s doing great. She participated in cheerleading, gymnastics and Girls on the Run,” she said.

“Girls on the Run is a kind of empowerment group that runs, it’s kind of Girl Scouts meets track. They teach them to run, and they do a 5K at the end of the season. She’s doing it a second time and she loves it,” said Vargas.

According to DLA statistics, more than 100,000 people in the United States are waiting for lifesaving organ transplants. Every nine minutes another person is added to the national transplant waiting list.

Because of the wait time, the DLA estimates 6,000 people in the U.S. died in 2021 while on the transplant waiting list, and 17 people die each day while waiting for an organ transplant.

The most-needed organ is the kidney, with 85% of patients needing that organ.

Numbers such as those make it more important for people to register to donate an organ.

“We are grateful because most people don’t have two different transplants before they are in kindergarten,” Vargas said. “Everyone can register with an organ procurement organization. People can register online, at the DMV, and a bunch of different ways.”

There are two ways to donate, deceased and living donations.

Deceased organ donation is the process of giving an organ or a part of an organ, at the time of the donor’s death, for the purpose of transplantation to another person.

Living donations can be a directed or non-directed donation.

In a directed donation, the living donor names the specific person to receive the transplant. This is the most common type of living donation. In a directed donation, the living donor may be a biological relative, an unrelated person who has a personal or social connection with the transplant candidate, or an unrelated person who has hears about the candidate’s need.

In a non-directed donation, the living donor does not name the specific person to receive transplant. The match is determined based on medical compatibility with a patient on the national transplant waiting list.

One way to register in both cases is through Donate Life America’s National Donate Life Living Donor Registry, a national-reaching living donor registry with the goal of reducing access barriers for prospective living donors.

Individuals between the ages of 18 and 65 who register their decision to be a deceased organ, eye and tissue donor through the National Donate Life Registry, RegisterMe.org, also will be offered the opportunity to register their interest in being a living kidney donor.

According to Donate Life America, or DLA, organ donations can save up to eight lives, a cornea donation could restore the eyesight of two people, while a tissue donation could bring healing to up to 75 people.

The DLA said in 2022, nearly 21,300 donors brought new life to recipients and their families. In fact, in 2022, the United States reached a historic milestone, achieving its 1 millionth organ transplant, more than any other country in the world.

Each April, DLA, a 501(c) 3 nonprofit organization, leads the observance of National Donate Life Month to focus national attention on the need and importance of organ, eye and tissue donation. DLA owns, manages and promotes Donate Life, the national logo and brand for the cause of donation; motivates the public to register as organ, eye and tissue donors; provides education about living donation; manages the National Donate Life Registry; and develops and executes campaigns to promote donation.

Rosie’s condition brought a lot of changes to the Vargas’ lives. The family originally lived in Thousand Oaks, Calif., and flew to UPMC Children’s Hospital for their daughter’s transplant because, she said, “It was the best in the country.”

When Rosie needed a second transplant in 2014, they decided to move to Pittsburgh in 2015, Vargas said, “And in the eight years since, we are still here. We love it. It’s the best thing we ever did.

“Cranberry Township is an amazing city to live in, and we just fell in love with it,” she said.

Both Sarah and Tony Vargs work for FedEx.

With Rosie’s health no longer a concern, other than one or two checkups annually, the Vargases decided to foster a 4- and a 7-year-old for the last three months with the hopes of adopting them.

The three, she said, “get along as much as any three siblings get along.”

But she added, she realizes their life with Rosie and her possible siblings wouldn’t be possible without the decisions of both the living and the deceased organ donors who contributed livers to their daughter.

“You are six times more likely to need a transplant than to be a donor, and if you accept a lifesaving transplant why would you not consider being an organ donor?” she asked.

“I would say organ donations are also for your family. In order to be an organ donor, you likely died in a tragic way, if you had a stroke or a car accident,” she said. By designating yourself as an organ donor, she said, your family would know that in death you were responsible for saving the lives of others.