Utah family who lost daughter awaiting heart transplant becomes advocates for organ donation

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UTAH – A Utah family became advocates for organ donation after the death of their 8-year-old daughter, and they are sharing their story in this week's edition of Gift of Hope.

James and Valeria Frandsen’s daughter, Vittoria, was born with Marfan syndrome, which is a connective tissue disorder.

At the age of eight she needed surgery to replace her aorta with a synthetic implant.

“In surgery there were complications, her heart was damaged, and she lost the use of half of her heart,” James Frandsen said.

After a month, a heart transplant didn’t happen, and she passed away in the ICU.

“She was a very stubborn, awesome girl,” Valeria Frandsen said. “She was beautiful, she was very generous, very talented. She loved drawing, she loved watching ‘Untold Stories of the ER’ with her dad because she spent so much time in the hospital... She loved her little brother, just for the nine months she was able to be with him.”

Vittoria's bedroom is a place her parents and brother can go to remember. It houses much of her artwork, and there's also the letter she wrote to her brother, Jacomo, before her last surgery.

“It was almost like she knew, and it was kind of a letter to say goodbye, that he could appreciate when he was older,” James Frandsen said.

In the letter, Vittoria drew a picture of herself with her brother and included a special message just for him.

The loss of such a special child has led the Frandsens to become organ donation advocates.

“And the impact it can have, so I think I learned a lot, and hope we might inspire others to, one, raise the awareness but also sign up and register," James Frandsen said. "And in the event [of a death], that one last gift that you can give in life.”

In spite of all her health issues, Vittoria wanted to be a heart or back doctor to help children like her. She had scoliosis and had titanium rods in her back.

There are two ways you can help children and others like Vittoria. The first is to say “yes” to organ donation on your driver’s license or state ID card. The second is to donate to the Kurt Oscarson Fund on your state income tax form.

For more information, visit yesutah.org.