How do systems that are supposed to educate become so thoughtlessly cruel?
WHITEHALL, MICH. - Anna Bernhardt is dying.
The 9-year-old Whitehall, Mich., girl has Sanfilippo Syndrome, otherwise known as children’s Alzheimer’s.
It’s terminal illness caused by a defect in a single gene, found in one in 70,000 births. It is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules. Headaches are caused from pressure on the brain.
“Usually, children don’t make it into their middle teens,’’ said Justina Bernhardt, her mother. “We have a 14-year-old (Gabe) who also has the disease. We just want Anna to be in a comfortable environment and live her life to the fullest no matter how much time she has left.’’
Anna’s family is embroiled in a due process case with the Whitehall School district. Officials want to send Anna roughly 14.6 miles away to a facility in Muskegon called The Wesley School for children with special needs.
A due process hearing is scheduled for Thursday and Friday, in which an administrative law judge will hear testimony. The hearing is a process developed by the state of Michigan and the Office of Special Education to help reach agreements when parents and school districts are at odds about certain conditions of learning for a child.
After exhausting all her options, Bernhardt filed a complaint with the Office of Special Education after learning the school wanted to move Anna.