Desperate social media plea helps Jefferson County family bring - KMOV.com

Desperate social media plea helps Jefferson County family bring sick child home

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William Aubochon, 1, was diagnosed with Rett Syndrome, a rare genetic disease. William Aubochon, 1, was diagnosed with Rett Syndrome, a rare genetic disease.
ST. LOUIS, Mo. (KMOV.com) -

A Jefferson County family's desperate plea on social media asking lawmakers to help their son who is battling a rare genetic condition is starting to paying off. 

For three months, the Aubuchon family has been living at St. Louis Children's hospital as their 1 -year-old son, William, is battling Rett Syndrome (RS).  The neurological disorder  causes developmental and nervous system problems which begins to show effects in infancy or early childhood.  RS is usually found in girls but males with the disorder typically do not survive birth while a small group may live until two-years-old

The parents, Justine and Billy Aubuchon, said they don't know how much time they have left with their son.  

"It's a progressive condition so we don't know what to expect," said Justine Aubuchon, "we can hope for the best."

The family's insurance will not cover private duty nursing that he is required which could cost to $10,000 a month. The Aubuchons are trying to get a Sarah Lopez Waiver that could allow them to receive Medicaid to bring William home. 

As of Friday afternoon, St. Louis Children's Hospital said four lawmakers have heard the family's story and the state has approved Medicaid for them. Justine and Billy will have to line up nurses for home care but they could face challenges. 

"There is a shortage across the state and across the nation in finding not just funding for the resource to pay for home nursing but also the availability of the type of nurse that's really required with the skill set to safely care for a child like this at home," said Jodi Carter from Washington University.

While they're Medicaid eligible, there's also a waiting list for the number of slots available for Sarah Lopez Waiver. 

"Unfortunately kids have had to wait a long time, months, years and so our reason to come forward requesting a higher priority spot is we don't know if we have months or years with William so we would hate to spend all of that time in the hospital," said Justine. 

The family will host a strollathon T-shirt fundraiser on May 5 to bring awareness to Rett Syndrome. The event will be held at the Jewish Community Center in Creve Couer.

Donations will help offset medical cost for the family. 

For more information, click here. 

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