That mid-September day was the last day 11-year-old Kyle Mules attended Union Grove Middle School in Greenback. Within a week he was hospitalized, paralyzed from the neck down.
What his mother could not have known was that somewhere, silent inside his body, Kyle’s immune system was attacking his nerves due to an extremely rare autoimmune disorder known as Guillain-Barre syndrome (GBS).
Not only did Kyle Mules have this rare syndrome, but he had the worse case doctors had ever seen. As it became clear his illness would require more care than he could get in Knoxville, his mother quit her job and moved into her son’s Atlanta hospital room to be by his side.
“That’s where you’d be as a mom; you’d want to be with your child,” said Kelly.
She has since learned how to give shots. She has learned about respirators and tracheotomies and feeding tubes. She has learned how to sleep on a cot beneath the tangles of cables connecting her son to the machines keeping him alive.
She has not learned how to accept her son’s present situation.
“I have my good moments and bad,” she said. “I just try to keep myself strong and in that place of numbness.”
While her faith in God has never wavered, she found herself unable to listen to Christmas music this season.
According to the National Institute of Neurological Disorders and Stroke, GBS is a disorder in which the body’s immune system attacks part of the peripheral nervous system. Although not much is known for sure, it is believed that the attack is caused by infection. In Kyle’s case, his cold turned into walking pneumonia, which his doctors believe triggered his episode of GBS.
“One person told me it was the perfect storm,” said Kelly.
Kyle started out with cold-like symptoms. His sixth-grade language arts teacher Carol Ierulli noticed her student with his head down on his desk that Friday. She asked if he wanted to see the nurse and he said he just didn’t feel good but he would be OK. She hasn’t seen him since.
“I taught 30 years and nothing like this ever happened,” she said.
Within a few days of the initial onset, Kyle complained of severe pain in his hands and feet. His pediatrician admitted him to Children’s Hospital.
Kelly explained Kyle’s condition, saying our nerves are like telephone or cable wires. They have a casing around the outside protecting the sensitive internal wiring. “Kyle’s casings have been destroyed,” she said.
The doctors have told her the nerves will repair themselves but how soon and to what extent is yet to be determined. In the meantime, Kyle cannot move most of his body but he has extraordinary, and often painful, feeling everywhere.
While most GBS patients fully recover, the family was recently told that Kyle might have to have help breathing for the rest of his life. They were also told he may never walk again. Kelly was reluctant to repeat the doctors’ findings, as she refuses to believe they’re right.
“There’s just a lot about this they don’t know,” she said. “We don’t know what Kyle’s journey is going to be like.”
The Mules’ Greenback community has rallied around them. One man volunteered to help make the family home handicapped accessible. A parent at Kyle’s school designed T-shirts that are being sold to raise money for all the bills that will inevitably begin to pile up.
The school is planning to send Kyle a picture of all the students wearing their “fight the good fight” shirts.
Kyle’s schoolmates also raised more than $1,000 with a “Coins for Kyle” drive. They send him cards and follow his progress at his website, www.caringbridge.org/visit/kylemules. Kyle’s aunt, Angela Beharry, currently maintains the site. At press time it had almost 8,000 visits.
Kyle’s teacher said when she prepares her seating chart she always leaves a space for Kyle. “He’s not there,” she said. “There’s just a hole.”
Ms. Ierulli has kept in close contact with her student, even receiving a phone call from him when he first regained his ability to talk.
“How quickly life can change,” she said.
Kyle is getting fitted for an electric wheelchair and may be sent home soon. His family is busy getting his home ready and learning how to care for him there. They are also learning how frustrating it can be not knowing what they will need or how they will get it.
Kelly recently priced a handicapped-accessible van and found it was substantially more than they could afford. The family has insurance but some things are not covered and other things are only somewhat covered.
“People ask me all the time what I need,” said Kelly. “It’s hard because I don’t know.”
Kyle has been selected to receive a wish from the Make-A-Wish Foundation. Kelly said this news has been both happy and sad. It has been fun for them to dream about what wish he will see fulfilled, but Kyle knows what the foundation is all about. “He knows that’s something that happens to really sick kids,” said Kelly.
All of this would be hard for any family but it is especially hard for the Mules.
“We were hiking and playing basketball; he was totally normal,” said Kelly. “It’s hard just having everything you know just kind of taken away from you.”
She described herself, her husband Dale, and their two sons as “outdoorsy” saying they especially loved being on the lake.
“It’s life changing,” she said. “It’s life changing and it’s not like you have a choice.”