How Sick Teens Are Calling The Shots When It Comes To Facing Death

04/02/2015 05:36 pm ET | Updated Apr 02, 2015

When it comes to their health, teens and young adults with medical problems don't always have much control. Thanks to a planning guide, they can find comfort and gain a little power -- by having a say in their death.

At the age of 15, Karly Koch was diagnosed with a rare genetic condition called DOCK8. In a video from The New York Times, the now 20-year-old explains how it affects her immune system making her vulnerable to infection.

“It basically leaves you without an immune system to fight for yourself,” she said.

Four years ago, Karly’s older sister, Kelsey, died from complications associated with the disorder. After her death, her family made decisions and hoped they were what Kelsey wanted. When Karly was in the hospital last spring with congestive heart failure, her mother, Tammy Koch, wanted to make sure she had the chance to express her wishes that her sister didn’t.

“We had already buried a child and had to guess what she wanted,” she told The New York Times. “So we wanted Karly to have a voice.”

That voice came in the form of a planning guide. Called “Voicing My Choices,” the end-of-life guide from Aging With Dignity allows young patients to make decisions about their medical treatment, their environment and their remembrance. According to The New York Times, it’s the first one designed for and mainly by adolescents and young adults.

AshLeigh McHale wrote in her guide that she wanted balloons to be released at her service. The 17-year-old, whose tumors spread to her organs, filled it out after flying from Oklahoma to Maryland to treat her melanoma. When she died last July, her family dressed her in jeans, a white shirt and cowgirl boots for the funeral, just like her guide suggested.

Diagnosed with metastatic bone cancer at 18, Lauren Weller Sidorowicz joined a focus group whose opinions helped create the planning guide. Thanks to her guide, her family and friends knew to “find peace and a way to remember the positive" when she died in 2011 at the age of 26.

Karly has a few requests as well. In her guide, she notes that visitors who are upset or crying are welcomed. She simply wants them to share their feelings with her. She also would like music from TobyMac and Newsboys at her service. As for being remembered, she hopes to help doctors learn more about DOCK8 even after her death.

“I would want to know my cause of death, and I want my body to be studied for DOCK8 to help with future research,” she wrote in her guide.

This kind of legacy is what makes the planning guide so appealing for sick teens and young people. Instead of staring death in the face and letting it call the shots for them, they're getting the chance to gain a little more control of their lives.

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