Note: after this story caught the attention of Mary Free Bed's CEO, who is working to get the Beute's an appointment to modify Sadie's wheelchair.
A 10-year-old girl from Hudsonville is couch-ridden and bed-ridden because she cannot get modifications done to her wheelchair during the COVID-19 pandemic.
10-year-old Sadie Beute has significant special needs. She has been diagnosed with cerebral palsy and hydrocephalus, a condition where fluid builds up in the brain. She suffers from scoliosis, a condition where the spine is curved. Due to muscle formation, it is not uncommon for children with cerebral palsy to develop the condition. In Sadie's case, her spine was both curved and twisted.
In early March, Sadie underwent surgery to correct her spinal issues. She now has a metal rod in place from neck to pelvis. Sadie's spine had such a severe curvature that she grew 3 inches in height and 1.5 inches in her waist post-surgery.
Following the operation, Sadie remained in the hospital for 4 nights. For two days, she was on a ventilator.
"So it was the first time we actually saw her on the [ventilator]," said Mom Audrey Beute. "That was probably one of the hardest things that I have ever seen. It was awful seeing her in that type of position."
Following Sadie's discharge, the Beute's set up an appointment at Mary Free Bed Orthotics & Prosthetics + Bionics for wheelchair modifications. The process can take several weeks due to paperwork and approval going through the family's insurance company.
Last week, Audrey still had not seen any paperwork on her end and called Mary Free Bed to ask about the status of the modifications, who explained they were not carrying out any appointments for wheelchair modifications.
"The the woman I spoke with just explained that it's not essential," said Audrey. "She goes, 'You can try calling us at the end of April, and we'll try to see if we're scheduling in May, and we can hopefully get this done.'
Audrey replied, "You're kidding? Like this is not, is this real?"
Without a wheelchair, Sadie is confined indoors to the couch or her bed. She can't even sit at the kitchen table to have dinner with her family.
The modifications needed include: a new headrest, backrest, armrests, a new seat, pummel (the attachment that goes between her legs), hip extenders and chest strap. It would be virtually all of the main components that make up the chair, which is designed to 'grow' with Sadie through these types of modifications. She has had the same frame since the time she was 3.
"It's her way of engaging with us," said Audrey. "It's her way of learning. It's her way of exploring. It's her everything. The wheelchair to her is is her life. We can't get outside unless we have her wheelchair. We can't bring her even on a car ride right now unless we have a wheelchair. We can't bring her to a doctor's appointment unless we have her wheelchair."
Mary Free Bed could not give Audrey a definite timeline of when the service could be performed, but is seeking for additional clarity and answers about the decision to deem it 'non-essential.'
"For her, for us and for safety, it's a matter of a quality of life," said Audrey. "I'm her voice, you know, and we're the ones that have to fight for her. We have to be the ones that are saying like, this is not a quality of life, like, nobody wants to lay on their couch and do nothing all day long and then be lifted from the couch and put into bed."
Audrey says she tried calling Mary Free Bed multiple times to ask for clarity about where the decision stemmed from, whether that was independently or from Governor Whitmer's executive order.
When the FOX 17 Problem Solvers reached out, the rehabilitation hospital responded with this statement:
"Without permission from a patient or guardian, it's against the law for Mary Free Bed staff members to comment on any personal health matters. We haven't received permission to talk about this case, but we're looking forward to working with this family to meet their needs."
