Updated: 01/24/2014 5:13 PM
Created: 01/23/2014 2:03 PM KSTP.com
By: Brandi Powell
A Cottage Grove mother and father are making tough choices for their very sick son who has something called Lissencephaly. It means he's not having some surgeries that others with one of his disorders might get. The Williams family sat down with KSTP to share their story.
Beth Ness-Williams and her husband TaJuan Williams work hard to take care of their 8 month old son. He's got a tube in him for food, takes 15 medications a day, and has hundreds of seizures in a 24 hour period.
Beth says she's constantly on the phone with doctors and pharmacies.
TaJuan is a former Marine. Beth is a nurse. These first-time parents wish their son Rory could laugh, or simply wrap his hands around their fingers. But that's not the Williams' reality.
They remember when the doctor told them the challenging news shortly after Rory was born. "She sat in a chair and said your son has a severe brain disorder and told us what he will and won't do," Beth recalled.
Rory has Lissencephaly. The brain stops developing between 4 and 8 months old. His neurologist, Beverly Wical, says there's no cure.
As for Rory's troubled breathing, some surgeries could help, but this Cottage Grove family has opted against that. "It might prolong his life. It might not. We just don't see that, for him at least, as quality of life."
"The whole thing was we want to be a family," TaJuan said. "We want to at least try and enjoy him as long as we can as a family and not be tied in the hospital."
"With a child with lissencephaly, each medical decision that the family faces always needs to be put in to the context of, are we doing something for the child or to the child," Dr. Beverly Wical said. She's a pediatric neurologist at Gillette Children's Hospital.
The Williamses have decided the best they can do for baby Rory is give him the gift of life with them at home.
"I definitely know in my heart that this was meant to be and God has a purpose for me and Rory and Jason for sure," Beth said.
They're learning what it means for them to love.Doctors say decades ago, babies wouldn't live past a couple years. They say this is the first generation of people suffering from it who are living into their teens.
The Williams' relatives are having a "Rally for Rory" on Saturday evening. It's from 4-8 p.m. at Valley Bar and Grill in Prescott, Wisconsin. The public is welcome. Donations will go toward covering future medical costs.
Rory's mom says she's working on advocacy projects for Lissencephaly so that more research can be done in the future to help families like hers.