By CHELSAE CORDIA
Staff Writer
When her grandson was born, doctors told Lisa Thomas he wouldn't survive the night. Nearly three years later, the toddler continues proving them wrong.
Kayden Keith was born in May 2015 with Fryns syndrome, a rare developmental condition affecting various parts of his body.
In most cases, babies with Fryns die before birth or in early infancy, according to the National Library of Medicine.
However, despite research claims and never-ending obstacles the little boy keeps pushing forward, said his grandmother. By his side is a dedicated family who has sacrificed along the way to ensure the 2-year-old remains safe and alive.
"Our lives are totally around his world," Thomas said. "The reason why he is still here is because we've been adamant about not leaving him."
Like a tight-knit team, Thomas, with her parents Donna and Ivan Richmann, lived at the Ronald McDonald House in St. Louis for six months in 2015, balancing their lives in Poplar Bluff with the needs of their family.
They worked together to comfort the baby and his mother, who experienced complications during Kayden's birth at Barnes-Jewish Hospital. His great-grandmother spent the first consecutive six weeks of his life at St. Louis Childrens Hospital.
Today, the same mind-set still applies.
"He was never supposed to survive out of the (operating room)," Thomas said. "We've been put on palliative care. We've been talked to so many times to the point we're like, 'Just stay away. We don't want to hear you anymore.'"
On Thursday evening, Thomas had been awake for more than 36 hours. The family's overnight nurse was unable to cover her shift the night before and was unavailable again on Thursday. The absence meant the 52-year-old would be awake for at least another 24 hours.
But it's okay, said Thomas, who works a full-time job aside from her care giving duties.
Thomas said even though Keith's hearing and sight are severely impaired, his sense of touch is enhanced. Keith is dependent on a ventilator to breathe and fed through a gastric feeding tube. His heart is located near the center of his chest instead of to the left. He weighs about 60 pounds, has undergone nine major surgeries and requires around-the-clock care from two fully-trained people.
Physically, his characteristics differ from those of a healthy toddler. Keith is considered a quadriplegic, Thomas said. His chunky little feet are clubbed, his chin is narrow, his eyes are slanted, but he has the same sweet squishiness as any other almost 3-year-old.
Thomas said Keith is currently the only child living with Fryns syndrome in the United States and possibly in the world, though she cannot confirm the latter.
While Thomas works during the day, her retired parents assist the nurse on duty. Ivan, 80, who now has to schedule time to work in the yard, said he will do whatever it takes to keep his great grandson out of a permanent caring facility.
The former University of Mississippi basketball player is accustomed to a busy lifestyle and doesn't seem to be shaken by this change in circumstance. In fact, Keith has a tiny Ole Miss T-shirt he sports, which makes his great-grandpa proud.
To accommodate the demanding routine, Thomas moved into her parents home. They converted the former sun room into a haven for the child and his medical equipment. Machines buzz and beep while the evening news plays on a big screen television hanging on the wall. Thomas lives in the basement with Keith and her parents reside upstairs.
The duty nurse leaves at 5 p.m. On a typical day, Thomas drives straight home from work to take over.
"We want to make sure he has the best quality of life that he's able to," she said, and Ivan nodded in agreement.
While the family's routine is scheduled to the minute, it hasn't always been as demanding, Thomas said.
Last year, Keith's mother suffered a nervous breakdown, she explained. The young woman has battled mental illness off and on her entire life. When Keith's father removed himself from the situation, it became too much for her daughter to handle.
"She was awesome for two years," she continued. "It was unbelievable. She focused on Kayden and I'd manage his appointments... Once his dad moved out and left, she just lost it."
Since July, Keith has relied solely on Thomas and her parents for support.
"We wouldn't make it without each other," Thomas added. "Otherwise, he wouldn't be here. He's a good baby, good natured. But he's a hard, complicated baby to take care of."
Thomas said during the family's struggles, they have never asked for assistance. Insurance covers many of Keith's expenses, but the family has to pay for other things, such as a fully-equipped handicap accessible van to take the child back and forth to his appointments in St. Louis, which they bought used. A generator for their home in case the power goes out was another out-of-pocket necessity.
They also pay more than $100 per month for diapers and $280 per month for cannabis oil to limit the amount of seizures Keith has daily. Thomas said the financial hardship is difficult to manage.
"A lot of stuff we've had to let go in order to take care of him," she said. "We always live day to day. That's why we bought that van when we saw it, because it met the needs of the time."
Currently the van has a manual lift to move Keith's wheelchair in and out. They are hoping to one day upgrade to a powered lift, as the boy continues to grow and gain weight, she said.
The money Thomas earns at her job is put toward Keith's medical costs, and her parents, despite living on a fixed income, have utilized credit cards to help, she added.
"It's just hard, you know?" Thomas asked. "First of all they said he wasn't going to make it. Second of all, we've worked all our lives. We've never asked for a handout. And you know, that's what it feels like, but we're at a point where his quality of life matters so much more."
Last month, Cheri Morgan, a family friend, threw a spaghetti dinner fundraiser, generating nearly $2,000. Thomas described the event as a blessing.
"This family is a very proud family," Morgan said. "They have been trying to take care of everything themselves, but this mountain they are climbing continues to rise and it is time they get some help."
Morgan started a group called Kayden's Kause to assist with fundraising endeavors. She created a Go Fund Me account and even reached out to "The Ellen Show."
Morgan said while Keith is a miracle, she is concerned about the quality of life for Thomas and her parents.
Anyone interested in contributing to Kayden's Kause should contact Morgan at (573) 718-6854.