Rally for Rory: Benefit planned for Cottage Grove family of baby with rare genetic disorder
From the start of her pregnancy, Beth Ness-Williams knew that her first child was likely to be born with some medical concerns.
Complications began early, the Cottage Grove woman said, and at 27 weeks she was put on bed rest.
Two days after her son, Rory, was born, she and her husband, TaJuan Williams, found out Rory had a rare genetic disorder called Miller-Dieker Syndrome (MDS). MDS affects brain development; while a normal brain has folds and grooves in its surface, those affected by MDS have abnormally smooth brains, a condition called lissencephaly.
“In Rory’s case, it’s just smooth,” Beth said. “He has no folds at all.”
The folds increase the surface area of the cerebral cortex, which is largely responsible for sensory impulses, motor skills, speech, hearing, memory and higher intellectual functions.
Now 8 months old, Rory can’t do any purposeful movements, Beth said. If a toy is placed by his hand he can swat at it, but can’t grab it. He can’t sit and can’t even eat without a feeding tube. He can hear and taste, Beth said, and every once in a while he can smile and coo. What he does best, she said, is suck on a pacifier.
“On the scale of brain disorders, this is by far the worst,” Beth said.
What makes Rory’s case even rarer is that he also has an extra chromosome, which his family and doctors believe may be responsible for immune issues. Also, neither of Rory’s parents are carriers of MDS. Beth said there’s only a 1 percent chance that they could have another child with the same condition.
The news of Rory’s condition hit hard.
“I was devastated,” she said. “I was a walking zombie for a while.”
But with a lot of prayer and the support of family and friends, the family began to adjust. Now, Beth and TaJuan are focused on helping their son through the medical issues he faces daily. Besides MDS, Rory also suffers from several other health problems. He has seizures — more than 200 subclinical and clinical seizures every day; he has some immune system deficiencies, weak airways and more.
“Despite all this, he’s adorable,” Beth said.
There’s no cure for MDS, and Rory’s prognosis isn’t very good. Already, Rory has spent about half his life in a hospital or clinic, and every moment is spent taking care of him.
It hasn’t been easy on the family.
“It’s like we’re in survival mode,” Beth said. “It’s literally one day at a time. I have to live by that. Sometimes it’s one minute at a time.
“He’s the main focus. That’s all you really have room for.”
Because there’s no cure, Beth and TaJuan are doing all they can to keep their son comfortable and to let him live his life as best he can. For that reason they’ve decided that they won’t have any surgeries done and they won’t have a tracheostomy done. They want to be able to spend his life doing things with him, not doing things to him, Beth said.
To help Beth, TaJuan and Rory as medical bills continue, Beth’s aunt Joellen Finch is organizing a benefit event, Rally for Rory. The event is set for Jan. 25, starting at 4 p.m. at Valley Bar and Grill, W. 10299 Highway 10 in Prescott, Wis. “We’re trying to raise funds so when times get tough for us, we will have a security blanket financially,” Beth said.
TaJuan can’t take off work, she said, and her job as a nurse at United Hospital is often put on hold.
“I work as much as I can, but they’re extremely supportive,” she said.
The benefit will feature a pulled pork sandwich meal from 4-8 p.m. The meal is $10 for adults and $5 for children. A raffle and silent auction will also be held. There are multiple baskets and several large items that will be raffled and auctioned. There will be a bake sale, and T-shirts and bracelets will also be for sale. Live music will be provided by “Third Addiction.”
The Williams family is grateful for the support already given.
“It means the world, it gets me through the next day at this point,” Beth said. “… I honestly don’t feel worthy.”
People all across the country have shown support, whether by donations or by offering words of comfort or advice.
“I couldn’t do this without everybody,” she said.
The Williams family currently lives in Cottage Grove. Beth grew up in Woodbury and graduated from Prescott High School. Her father and many friends who are helping to support them live in Hastings. TaJuan, a New York native, served 13 years in the U.S. Marine Corps. He also served three wartime tours in the Middle East.
For more information about the benefit, visit www.facebook.com/events/549787421779697. Donations can be mailed to: Rally for Rory, Associated Bank, 222 Bush St., Red Wing, MN, 55066, or online at www.gofundme.com/rorywilliams.