WHITEHALL, Mich. (WOOD) — Parents of a 7-year-old girl with a rare and terminal disorder are fighting a plan by a Muskegon County school district to remove her from the school she attends with her siblings and send her to a different school a 90-minute bus ride away.
All of Justina and Lance Bernhardt’s six children have attended Whitehall District Schools. Three of the children have special needs. Their adult son has cerebral palsy and lives with them. Their 11-year-old son and 7-year-old daughter Anna both have Sanfilippo syndrome.
Sanfilippo is a genetic condition in which the body does not produce the enzyme that breaks down certain forms of sugar, resulting in cellular damage and a buildup of toxins that damages the brain.
“Anna in kindergarten a few years ago, you couldn’t tell her apart from her peers. And at some point, the kids hit a wall and they just start to move backwards,” Justina Bernhardt said.
The disease affects 1 in 70,000 people and is so rare that there are currently fewer than a dozen known cases in Michigan.
It is referred to as childhood Alzheimer’s.
“Much like an Alzheimer’s patient, their disease will spiral down faster if they’re removed to unfamiliar surroundings,” Justina Bernhardt said. “Two of her doctors wrote a letter, her social worker wrote a letter about the fact that it would not be a good decision for Anna to be removed from what she is familiar with.”
Kids who have Sanfilippo lose their ability to write, their potty training, their ability to walk, talk, eat and finally to breathe. Most die as teens or before — although research into enzyme replacements and gene therapy seem hopeful.
“Our goal with Anna at this point is to have her lead a happy life and lead as normal as possible life,” Justina Bernhardt said.
Whitehall District Schools and the Muskegon Area Intermediate School District recently decided that Anna should go to Wesley School — a school in Muskegon for students with special needs — an hour-and-a-half trip each way. The Bernhardts say they haven’t been giving a good explanation for why.
The Bernhardts say a total of three hours on the bus every day would be terribly hard on Anna. She would be separated from her siblings who attend Ealy Elementary.
“She’s part of that community and she belongs to that community and that school and we’re going to keep her there, too,” Justina Bernhardt said.
“We don’t feel that there’s anything she can gain from going to Wesley. There’s a lot that she can lose by leaving Whitehall and going to Wesley,” Lance Bernhardt said.
The parents say that having students like Anna in traditional schools helps other students learn empathy and acceptance.
“I think these kids serve a huge purpose, teaching compassion, teaching acceptance,” Justina Bernhardt said. “That’s what this is about, this is about giving her the best life she can have while she’s here and it’s about helping other people and we know that that happens.”
Because the parents and the district could not agree on where Anna should go, they are spending thousands on attorneys in a four-day hearing — essentially a trial — before an administrative law judge to decide the matter. If the Bernhardts win, the district pays their attorney fees.
“We don’t want to be at odds with the school,” Justina Bernhardt said. “They’ve heard from me that we think they do a terrific job.”
Whitehall Superintendent Jerry McDowell and a spokesperson for the ISD said they are not allowed by law to talk publicly about a student. But both said decisions are made to ensure all students are placed in the best possible educational environment.
The four-day due process hearing concludes Thursday and Friday, at which time the judge will decide where Anna will be placed.