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.
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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.
Attorney Michele R. Eaddy, representing the school district, said the Family Educational Rights and Privacy Act of 1974 prevents discussion about the case unless the family gives consent.
Eaddy did say that in most cases, the administrative judge usually decides to send the student to the school most capable of meeting his or her needs, which in this instance would be Whitehall or The Wesley School. In rare cases, a third facility is picked.
Bernhardt has letters from Brishia Kluck, a master's level clinician from Heath West of Muskegon, and Dr. Olufemi Soyode, pediatric neurologist and epileptologist for the Center for Adolescent and Child Neurology, saying the change could be detrimental to Anna’s already fading condition.
In a letter to Whitehall Schools, Dr. Karl Nicles of Port City Pediatrics in Muskegon said there would be no definitive benefit for Anna being moved to The Wesley School.
Justina Bernhardt wants her daughter to stay at the Ealy Elementary School, where Anna can continue be with children she has grown up with from kindergarten to her current status as a third-grader.
Bernhardt said shipping her daughter away to what would be about a 35-minute round-trip bus ride every day would only accelerate her decline.
“Plus she has motion sickness,’’ said Myra Dutton, the attorney representing the family in the case.
Superintendent Jerry McDowell said the due process complaint is a system not used very often, but called it “a good system.’’
“It’s defined to bring closure to situations such as this,’’ he said.
Because of privacy issues, McDowell couldn’t discuss the Bernhardt case, but did say in the past, the school system has been praised for its work with special needs children, ranging from birth to age 26.
“We provide services to meet the needs of all children to the absolute best of our capacity,’’ said McDowell. “We have an extensive system. We want to put in place whatever it takes to make sure they learn at as high a level as possible.’’