Cape native credits support system for her thriving with rare condition

Cape Girardeau native Emily Hendricks Jensen was not expected to survive past infancy. Next month, she will celebrate her 35th birthday.

Hendricks Jensen has VACTERL, originally called VATER, the exact cause of which has not been determined. Each letter stands for a different symptom of the condition and a person needs at least three of them to be diagnosed with it — she has all seven. It stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies and limb abnormalities.

According to the National Organization of Rare Disorders, about one per 10,000 to 40,000 live births have the condition, but the organization is likely underdiagnosed.

All Hendricks Jensen's organs have been affected in some way, she said. For instance, she had surgery in 1999 to create a bladder out of her own colon since her original bladder stopped growing. To her knowledge, she was one of the first to have the surgery and it is now done more commonly.

"There's a couple of other man-made things in there. So I'm more man-made than natural at this point," she said with a chuckle.

Emily Hendricks Jensen and her father, John Hendricks.Submitted

In some ways, VACTERL has complicated her life, such as having more than 150 surgeries in her lifetime, so far, but Hendricks Jensen said she is grateful for it.

Emily Hendricks Jensen and her mother, Cheryl Maloney.Submitted

"I'm one of the weird ones where I'm actually grateful that I had it, and that I do have it," she said. "Don't get me wrong, the hospital parts suck. The surgeries are unpleasant ... but I met some of my best friends through it, and my husband. We've been married 10 years tomorrow. These people are my second family, and I love it, and I love them. I'm so glad I have them in my life."

Support

She said she has survived VACTERL with the ultimate support system — her parents, husband, siblings, cousins, extended family and friends.

Hendricks Jensen met her husband, Mathies Jensen, in 2005 at a VACTERL conference in Colorado. Both have been diagnosed with the condition, but Mathies Jensen, a native of Denmark, has less severe symptoms. She said they are the king and queen of the VACTERL community because of their involvement in it.

"I'm not going to live to an old age. Neither is my husband. We know. We try to make every day the best we can," Hendricks Jensen said.

And though her parents, John Hendricks and Cheryl Maloney, are now divorced, she said they have worked together to be an outstanding support system and advocates all of her life. In addition, but not limited to, her cousin Elizabeth Brooks, stepsister Molly Goetz, stepbrother Sam Hahs and half sister Madison Hendricks have also been stand-out supporters.

They have all been there for her, Hendricks Jensen said, especially during the hardest part of her life when she was hospitalized for 300 days in 2012, mostly in an intensive care unit. She had 10 surgeries in three months, after which she had to learn how to walk and eat again.

"I was a very, very sick, very, very sick person. When I came to the other side, I realized, 'You know what? Emily, you've been through hell, but you're here.' And I began to appreciate life a lot more. So much more," Hendricks Jensen said.

She now resides in Texas, but Hendricks Jensen grew up in Cape Girardeau. Her father, John Hendricks, owns The Book Rack of Cape Girardeau off of Independence Street. She said she practically lived in the store growing up. Will all the surgeries and doctors visits, she grew up reading, writing and crocheting, which she has developed into more than just hobbies today.

Hendricks Jensen's interest in writing started when, as a child, she couldn't sleep. She stayed up by writing her own stories. She eventually gravitated to journalism in middle school and practiced it further during her time at Southeast Missouri State University, which led her to work at the Southeast Missourian for some time, as well.

Sharing

Crocheting has been another constant in her life, which she shares with other people, too. She has made hundreds of baby hats and blankets to donate to hospitals, specifically for the neonatal intensive care units, including ones in Cape Girardeau, New Hampshire, Texas. She said early in her life, a nurse taught her how to crochet, and she has rarely put down her crocheting hooks ever since.

Recently, she has done various freelance pieces about her life experience, volunteering as a librarian for young girls at a residential foster center and is now studying for a master's degree in creative nonfiction.

Her thesis is a memoir, which she hopes to finish in December of next year and eventually publish. It will cover her health and her unique family. She has found sharing her perspective has helped her and other people.

"Life is not as hard as people can make it out to be. Life — don't get me wrong, there are very, very hard parts, but people need to relax and understand that life happens. That you can find the joy in practically anything. You can find the good in practically anything," Hendricks Jensen said.

She invites anyone who would like to talk with her to contact her through her website, www.emilyhendricksjensen.com/contact. More information about her life, writing and crocheting may be found at www.emilyhendricksjensen.com.