Gifted RIT/NTID Student Gives Hope, Life to Others

It’s not every college student who can say they’ve had a lifelong wish come true. But Lauren Aggen isn’t an ordinary college student.

She was born with hypoplastic left heart syndrome, leaving her left ventricle too small to pump blood through her body. Her prognosis for survival was bleak without a heart transplant.

When she was eight days old, a donor heart became available and she received her transplant. Of the eight children who received heart transplants that year in Chicago, four of them never went home and the other three have needed additional transplants.

“I’ve been very fortunate that my heart matched,” Aggen says.

“Usually they have to use paddles to stimulate the heart, but it started beating on its own.”

Aggen, a second-year Applied Liberal Arts major at Rochester Institute of Technology’s National Technical Institute for the Deaf, still lives with medical issues. The medication she took while awaiting her transplant made her lose her hearing. Her kidneys are damaged. She’s very susceptible to illness – being exposed to chicken pox could be fatal. She takes 32 pills a day.

“I traded my death for a long-term medical condition,” she says.

But she’s not content to just enjoy her life. She wanted to thank her donor family – from Austin, Texas, who lost their child to Sudden Infant Death Syndrome – and to be an advocate to help others waiting for a transplant. She doesn’t know her donor’s name, but calls him “Austin” because that’s where he lived.

Aggen wanted to write a book to educate others and “express my gratitude to my donor family for making the unselfish decision to donate their son’s organ.”

On Dec. 20 – two days before her 21st birthday, Aggen’s book, Austin’s Gift: The Life of a Grateful Organ Recipient, will be released.

“It is truly a miracle that people whom I never knew, and who never knew I existed, were willing to do that, so that I could be here today to write my story,” Aggen wrote in her book. “Austin and his family have taught me a very important virtue: every day is a gift. I’m able to tell you my story because of Austin’s family, who, despite their great loss, were able to give a gift that will last me my entire life.”

Aggen began writing the book when she was 13. She had mentioned her dream to publish it someday, and the Make-A-Wish Foundation contacted Hilton Publishing Company in Indiana.

“When they saw my story, they were shocked – hey, she can actually write,” Aggen said. “They’ve been very generous.”

“I’ve been a professional editor for 15 years, and I can tell you honestly that it is a rare thing to find a manuscript so filled with passion, personality and the sheer joy of life,” says Grant Mabie, managing editor for Hilton Publishing. “That these chapters can come from a young woman to whom life has dealt so many cruel blows is, to me, humbling. Yet I’m sure Lauren would instead point to the many blessings life has bestowed her, most significantly her heart of course, which is part of her charm. Her story is filled with the innocence of youth, the determination to survive and thrive, and the wonder of life. I am proud to be involved in producing this book.”

A native of Algonquin, Ill., Aggen participated in workshops where organ donors talk about their experiences to others waiting for a transplant or to donor families. She was usually the youngest panelist, and the one who has had her transplanted organ the longest.

Aggen learned about RIT/NTID from a high school teacher who encouraged her to enter a writing contest sponsored by NTID.

She wrote about being her own advocate, won the contest and a trip to visit the college.

Aggen hasn’t let going to college in Rochester stop her from her advocacy. She walked in Rochester’s Lilac Parade with donors and other organ recipients – each holding a sign saying what organ they received and how many years they’ve had it. And she served as a judge for a “Donate Life” poster contest. In addition to activities with the Finger Lakes Eye & Tissue Bank, she plans to be involved with Friends of Strong Memorial Hospital locally, speaking with people waiting or who have received a transplant.

During a recent NTID theater production of “Inherit the Wind,” Aggen not only had an acting role in the play, she also set up a table in the lobby where people could sign up to become an organ donor. As a result, 14 people did.

“She’s just a very friendly, sweet person,” says Karen Guarino, communications director for the Rochester Eye & Tissue Bank.

“She has a quality about her – her smile is contagious. I just think she realizes the gift she has and she wants to help others. She wants people to know of her gift and how important organ tissue donation is.”

Although she’s seeing one dream become reality, Aggen isn’t done dreaming. Next, she’d like to see her book made into a movie. “And to have Steve Martin play my father,” she says.

Austin’s Gift lists for $15.95 and will be available beginning Dec. 20 through Amazon.com, or through the Hilton Publishing Company.

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