Welcome to Katie's Personal Page
Katie Bohn Was Born On February 15th, 1994, A Healthy Full Term Infant With Perfect Apgar Scores Of 9/10.
By Denise Bohn
"I want to live in hope.
You live in hope because unless you are in hope you don't act, you don't think, you don't involve yourself. So I'm involved. I belong to all kinds of organizations.
Monsignor George Higgins, who was a priest active in workers rights wrote, "I act. So I think, yes, I live in hope."
It is difficult to summarize these past 10 years, as no words can ever capture the roller coaster of emotions that occur as you are thrust into this special needs world. I know I speak for all of us in this regard.
Like many other children, Katie's story slowly unfolded. Although diagnosed with hypotonia at 6 months, doctors thought it was a benign type. She made slow but steady progress, but then began to develop a high muscle tone at around the age of two. An even more extensive and of course terrifying work-up ensued, including two MRI scans. All tests, including the scans, were normal. She was eventually diagnosed with spastic dystonic cerebral palsy, with an unknown cause.
We have pursued many of the same therapies that all of you have, both standard and alternative. Katie has also had surgery on her hips and feet. Some treatments have helped - others have not. Who knows why?
We searched everywhere for answers to the mystery of her brain. Excited by all of the news about advances in brain research, we pursued those avenues. However, we met closed doors. "Not much research in C.P. "was the familiar refrain. We were astounded that we know more about other universes and solar systems than our own brains. Our sense of frustration and even outrage at this grew - until we heard of Fia Richmond and the work she was doing in developing an organization devoted to furthering research into children's neurological disorders.
Katie is making progress. She is in an inclusive school setting, which she loves. She moves herself around in her wheelchair and wheeled stander, loving her independence. Her speech is improving and she is learning to read. She loves the playground, music, her American Girl doll, her books, her friends and family. Best of all her sense of humor continues to grow, despite all of her challenges. She brings us such joy.
We commend CNS for the work they are doing in bringing new insight and hope into the problems so many of our children face. We believe the work these scientists do will revolutionize medicine and we are proud to be a part of this exciting organization.
Submitted by Denise Bohn, Denise, her husband John and daughter Katie live in Chicago, IL.
