Living with spina bifida
Regarding your article about young adults with spina bifida (“Trying life on for size,” Sept. 2): When a child with a disability reaches adulthood, parents are often shocked by the lack of services available to help their child move toward independence.
My son was born with spina bifida and later was afflicted with traumatic brain injury during surgery. Yet through all his trials and suffering, his desire for independence remained his strongest motivation. Though we searched and searched, until Anixter Village became an option, independent housing with supports was nonexistent. The day he picked out his apartment was the first day in years that we felt hope and anticipation for the future.
JANET RUSSELL / Highwood
I WAS BORN WITH spina bifida nearly 50 years ago. I’m glad to see life is improving for younger generations of patients.
I’ve been chronically unemployed for over 30 years. In 2006 I earned an associate’s degree in paralegal studies, but even with the help of the Illinois Department of Rehabilitation Services I haven’t been able to find an employer who will give me an opportunity.
I sure wish that I had the support system that the kids in the story did when I was their age.
BOB ONOFREY / Ottawa
I WANT YOUR readers to know that there was another generation of spina bifida survivors before the ones profiled in your article.
Growing up in the 1960s and ’70s, my family lived their story in Pittsburgh after my sister was born with a severe form of this birth defect. She is now in her mid-40s and has had many rich experiences, including education, work, love and volunteerism. Most of her contemporaries with the condition have survived, and many are pursuing successful volunteer and paying careers.
GINA LEY STEINER / Palatine
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