Community Corner
Common Genetic Disorder Hits Close to Home for Native Family
The first annual Great Steps for Neurofibromatosis event will kick off Saturday at 10:45 a.m. outside of West Bloomfield High School.
Katherine Zehr said that a lack of knowledge available on the subject of neurofibromatosis (NF) terrified her and her husband, Jeremy, when their daughter Clara was diagnosed the commonly inherited genetic disorder two years ago. Now, she wants to help change that.
The first annual Great Steps for NF event will kick off Saturday at 10:45 a.m. outside of . Zehr, described Clara, now age 2 ½ years old, as “a little trooper in the doctor’s office” who is “lucky” and happy despite her condition.
“The first two months were hard,” said Zehr, a Bloomfield Hills native currently living in St. Petersberg, FL. “My husband and I were tested and we’re both negative, so it’s just, ‘Where did this come from?’ … I joined an online support group, which brought it back down to reality and how to deal, what to do, but before then, we were lost.”
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Zehr said that NF is characterized by the growth of various-sized non-cancerous tumors on nerves in or leading away from the brain and spinal cord, and lesions in the vascular system. She added that while a lot of kids at Clara’s age suffer from a late development of motor skills due to their condition, that Clara’s condition is currently less severe. “It’s a waiting game, which adds to the difficulty,” Zehr said.
Despite her condition, Zehr said, Clara is very physically fit and enjoys to swim. She likes to joke and play tricks with her sister, Isabella, and she’s excited to have another sibling on the way in just three weeks.
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Zehr’s sister, Suzanne Saikalis, is helping to raise donations to go towards NF, Inc., Michigan, at the hour-long walk around the WBHS track Saturday. However, Zehr said, that the biggest achievement for her would be to increase awareness.
“My sister told me that 100 people are pre-registered to show up and that’s excellent,” said Zehr. “That’s 100 more people who know about it, and they e-mail 100 more people, and so on and so forth.”
For more information including how to donate to Great Steps for NF, visit its event page on
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