Meet Katie: 2017 Speak Now for Kids Family Advocacy Day Hero

Katie is truly a living miracle. At two days old, Katie was diagnosed as brain dead, but she shocked the world when she awoke from her coma three days later.

“When I took her home from the hospital, I was left with the impression that her brain was hurt badly as a result of being without oxygen. She had showed no respiratory effort after being born and the machines kept her breathing,” recalls Katie’s mother, Edwina.

rsz_gillette_childrens_specialty_healthcare_allee_katie_v3(1).jpgKatie’s appointments with neurologists revealed that her nervous system was ultra-sensitized, meaning that Katie was startled by even the slightest noise or movement. When she was about 2 years old, Katie was diagnosed with cerebral palsy (CP). Katie’s case of CP, however, was far from typical. Her family traveled across the country seeking advice from top doctors. “We traveled to University of Madison to see Dr. Albright, then to Rochester, New York to see Dr. Jonathan Mink, and again to University of Southern California to see Dr. Terence Sanger,” her mother details. No one had seen a CP patient with the same level of complexity as Katie, who experiences variable movement disorders that impact her ability to perform simple tasks like holding a pencil, and that make it difficult to adapt to her environment.

Her mother explains, “Katie's birth experience was so amazing that we decided it is ‘not possible to diagnose a miracle.’”  

Not having a solid, treatable diagnosis forces Katie and her family to think outside of the box, and they firmly believe that, for Katie, anything is possible. She might be the smartest 15-year-old you’ll meet; she is a straight-A student and excels in her Advanced Placement classes. Katie aspires to attend Harvard for college.

Help us welcome Katie to Washington, D.C.!

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commented 2017-07-08 12:04:46 -0400 · Flag
I am blessed to know and love her.