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Rare Genetic Disorder Leaves 37-Year-Old Mother Looking Like 'Dinosaur'

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Most parents can’t wait for the times when they can do fun activities with their children and receive joy from the privilege of raising someone they brought into this world. When a parent is stripped of that privilege, however, they can often feel like they are missing out on life itself.

Brooke Schilling was one of those parents. Born with a genetic disorder called neurofibromatosis, the former receptionist suffered extreme pain due to the result of tumors forming along nerve tissue on her spine.

The New York-based mother said she had lived a normal life until 2001, when she was forced to undergo surgery to remove a cancerous tumor, effectively leaving a hole in her left hip after the surgery.

Fast-forward 12 years later, and Schilling’s daughter, Sophia, was born, causing slight complications that made the new mother lean to the left when walking. By 2016, her condition took a sudden turn for the worse.



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The result, she says, left her bent and looking like a “dinosaur.”

“My spine was protruding out of my back and I was hunched over like a dinosaur,” said Schilling. “It was hard for me to walk and things just kept getting worse and worse and I was leaning more and more forward and becoming more contracted.”

And the posture with which the disorder was now forcing her to live through was also causing what she deemed “mind-blowing” pain. “It was awful,” she added.

To make matter worse, due to the severity of her condition, doctors refused to operate for fear the condition might worsen: they wouldn’t touch her with a “10 foot pole.” Schilling grew more depressed with every passing day when she couldn’t do things a mother should do.

“Other than loving her, hanging out and cuddling, I could do nothing for her,” recalled Schilling who, along with her husband Matthew, had moved in with in-laws for extra help. “I basically missed a year of her life doing things like taking her to pre-school,” she added.

Schilling admitted to continually asking herself: “Is it worth even living?” That all changed, however, when Schilling met Dr. Ronald Lehman, a professor of orthopedic surgery at New York Presbyterian Hospital, who would take the risk and perform an innovative surgery to change Schilling’s life forever.

The procedure relies on a robot to guide the surgeon in placing screws and rods in the back. It was a risky endeavor that could leave a patient paralyzed if an error occurred.

“This was an extremely unusual case in that her spine was dislocated,” said Dr. Lehman. “This is one of the most rare presentation for spinal pathology … we had to stabilize her spine as she was unable to even sit up.”

Though Schilling has to learn how to walk once again post-surgery, her story has a happy ending.

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The new mom admitted to feeling “just great” knowing that she can now walk straight — and without a walker — and be the mom she’s wanted to be for her daughter. The relief of social pressure, she added, was just another blessing.



“If they look at me, whether it’s a man or woman, it might be because a pretty woman just walked by instead of them thinking, ‘Oh, look at that poor thing,’” Schilling said.

“Without Dr. Lehman I don’t know what I would have done,” she added. “He’s my angel. He fixed me.”

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ASU grad who loves all things reading and writing.
Becky is an ASU grad who uses her spare time to read, write and play with her dog, Tasha. Her interests include politics, religion, and all things science. Her work has been published with ASU's Normal Noise, Phoenix Sister Cities, and "Dramatica," a university-run publication in Romania.
Education
Bachelor of Arts in English/Creative Writing
Topics of Expertise
Politics, Science/Tech, Faith, History, Gender Equality




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