IMPERIAL, Mo. – A Jefferson County family has been desperate to get their critically-ill child home after months in a hospital.
They said a system that could help families like theirs, was working against them. So, they made a plea for change, before they run out of time with their little boy.
St. Louis Children's Hospital isn't home for the Aubuchon family. But, for the last three months, it's felt that way.
“It's our living room, it's our bedroom and our bathroom,” said Justine Aubuchon, with a laugh.
Through it all, Billy and Justine Aubuchon of Imperial have been right beside their little boy, William Aubuchon.
“Also known as Warrior William. He's aggressively fighting through and wiggling through each day to get stronger,” said Justine.
One-year-old William has a rare genetic condition similar to Rett Syndrome, which is usually only found in girls. He was admitted to the hospital on February 1.
“Couldn't lift his head, couldn't lift his body. And recently a bigger incident where he had an episode of respiratory failure,” said Justine.
“He is the first known male with his mutation, in literature, to date,” added Billy.
Now a ventilator pumps air in and out of William’s lungs. Justine said his condition is progressive.
“We don't know what tomorrow will bring. We've been living day by day,” she said.
That makes getting out of the hospital that much more important.
“We want to bring our child home and spend time with him,” said Billy.
William's stable enough to go home. But he'll need 24-hour care, which could cost as much as $10,000 a month. Insurance won't cover it. So, the working-class Aubuchons applied for Medicaid.
“Because we do have a savings account with a certain amount above their limit we were denied, despite his disability,” said Justine.
Children’s Hospital nurse practitioner, Jodi Carter said it's a flaw in the system that affects many families.
“Unfortunately, if you proceed forward and go home you'll spend that savings account on the nursing resources and eventually be in a financial situation you don't want to be in. but then you'll meet the Medicaid criteria,” she said.
Desperate for any kind of help, the Aubuchons took to social media.
Their Facebook post was shared thousands of times, even reaching state legislators who, along with hospital staff, called the Missouri Department of Social Services to advocate for children like William.
Late Friday afternoon, William was approved for Medicaid.
Soon, the Aubuchons will head home. But their mission is far from complete.
“We want there to be equal opportunity for these kids and all of the services,” said Justine.
The Aubuchons will still need a waiver to continue Medicaid once they get home. They'll also need a qualified in-home nurse. Carter says that's a profession in extreme shortage across the United States.
You can follow William’s journey on Facebook. And you can join his family in a stroll-a-thon to raise money for Rett Syndrome research. Click here for more details.
