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SALT LAKE CITY — Sophia Anderson, who turns 5 on Friday, gleefully played with her brother and cousin Tuesday outside the Salt Lake Main Library, laughing loudly as she ran around the grounds.
One would never guess the young girl's had four heart surgeries, three of which were open-heart operations, received two life-saving tissue donations and lives with a rare congenital heart disease that causes complications to the left side of her heart, known as Shone's complex.
"She looks sweet but boy she is tough; she has been in a fight for her life since before she was even born," her mother, Sharon Anderson, said Tuesday. "Today she lives a beautiful life, and every day we are grateful for her life that's made possible through tissue donation."
Anderson shared her family's story at a panel, hosted by Donor Connect (formerly Intermountain Donor Services), where those personally impacted by tissue donation shared their stories to raise awareness of tissue donation and close out National Donate Life Month.
Anderson said her daughter's "complex, patchwork heart" is made up of heart valves from tissue donors — what she called a "priceless gift."
"What a difference valves can make — a huge difference it can make in having a functioning heart," she said. "Tissue donation is just as important as organ donation."
It's been about two years since Sophia's last heart surgery and, according to her mom, she is "rocking life."
"She is clever, fun and full of light," Anderson said. She also is "tenacious," her mother added, and loves to sing, ride bikes and play in the park.
Unfortunately, according to Anderson, none of her surgeries cured her condition and she will still need lifelong care and future interventions because of her heart complications.
"But today, her life is bright and happy," she said. "Our entire family is grateful for tissue donation and the quality of life that Sophia has enjoyed is tremendous — we just can't say thank you enough."
Donor tissue can also help improve the quality of life for individuals suffering from chronic pain.
A disc in D. Louise Brown's neck disintegrated about a decade ago, making simple everyday activities like walking, sitting or even holding her husband's hand difficult or impossible for Brown.
"All of those essential life abilities started to leave rather quickly 10 years ago," she said. "This searing pain became my constant companion."
In 2010 she received a piece of cadaver bone, smaller than a dime, that went in her neck. She said the relief was almost immediate after she woke up from surgery and recovered from the effects of anesthesia.
Even years later, she thinks about and enjoys her regained mobility and ponders about the bone she received.
"I'm aware how critical that little piece of bone was and the profound price that was paid for it," she said.
It's difficult to express her deep gratitude for her late donor and their family, she said, but she still made an attempt in a letter she sent them.
"What on earth do you say in a situation like this?" she wondered aloud Tuesday. "How do you say: 'I'm so sorry for your loss, but I'm so grateful for my gain?'"
She realized to honor her donor she needed to remain an organ and tissue donor herself and encourage others to check the donor box on their driver's licenses as well.
In addition, she said she needs to always remember the role her donor played in her life and live a "life worthy of that gift."
"The quality of my life that was restored came about because someone else's life had ended," she said.
Similar to Brown, Taryn Sorensen received a spinal cord injury from a devastating car accident in high school that also left one of her cervical discs ruptured. Her doctor told her she was lucky she wasn't paralyzed.
She described the intense pain Tuesday as similar to the "pins and needles" sensation experienced when an arm or leg falls asleep, but multiplied by 100.
Doctors used donated tissue to help repair her injuries.
"I am very, very lucky," Sorensen said. While there are still certain movements she still can't do today, such as looking up high or twisting her body in certain ways, she said her life has improved significantly thanks to her donor.
Since the surgery, she has graduated college, married her husband, had three kids, run multiple races and gone to Disneyland.
"I will forever be in debt to those who have made that decision (to donate) because of how it's effected me personally," she said.
Anderson said she hoped donor families found peace in knowing their loved one's tissue and organs helped save lives.
"I am heartened that there are people in this world who think of others even in those difficult personal times," she said. "I am thankful for families choosing to donate when they very easily could — and understandably — could choose not to."
One such person who thought of others in difficult times was Connor Walsh — a service-oriented 23-year-old who, among other things, was an emergency medical technician, Eagle Scout, intern at his local sheriff's office and lifeguard.
He died unexpectedly in 2017 after suffering a heart attack following a seizure.
His mother, Alice Walsh, described her only son as a "superhero" who was selfless both in life and in death.
"His desire was always to be a donor," she said at the news conference. "He generously donated his corneas, heart valves, bones, tendons, ligaments and tissues."
Walsh's corneas were donated to a woman in New Jersey, where Connor lived, and another woman abroad.
"I am comforted in knowing that my son gave sight to two individuals and he would be so proud that his gift of sight generously benefited and enriched someone else's life," the mother said. "My tragedy gave hope to those who needed it most in their darkest moments of despair."
Gifts of skin, bones, tendons and ligaments take a little longer to place since they are earmarked for individuals who match a specific criteria, Walsh explained.
Walsh's skin, bones and tendons are awaiting a project that should take place in a few months, she said. Tissue donors can save potentially help and heal 50 to 100 people, according to Donor Connect.
Donor skin can save the lives of burn victims and help in the healing process of vasectomy and post-mastectomy breast reconstruction, according to Pam Rawlins, regional director for tissue processor MTF Biologics.
"I'm so very proud of Connor's accomplishments and how he touched so many lives in his passing," Walsh said.
Though she may never meet the people who benefited from her son's donations, she said she knows they are grateful, just like Brown, Anderson and Sorensen are.
To become an organ and tissue donor, visit Utah Donor Registry at yesutah.org. Email: laurenbennett@deseretnews.com Twitter: laurmarben
