When you think of grit, you probably don’t envision a six-year-old little girl. But you would if you knew Kenna Lawson. Even at her tender age, the Yukon girl has spent more time in the hospital than most people ever will in a lifetime.
“INTEGRIS Health Children’s has been like a second home to us,” claims Kenna’s mother, Chelsea. “We’ve been coming here for most of her young life for a variety of different reasons to see numerous specialists and care teams. It’s wonderful how they are here at one hospital. There’s nowhere else we would trust our daughter’s life to.”
Kenna was born with a rare neurological condition called Angelman syndrome.
“She is missing a small gene on her 15th chromosome,” explained her father, Doug Lawson. “It causes severe developmental and intellectual delays, and epileptic seizures.”
Kenna was diagnosed at just four months old through genetic testing.
Jennifer Norman, M.D., is a pediatric neurologist with INTEGRIS Health Pediatric Specialties.
“Angelman syndrome is a rare neurological disorder that results in highly variable developmental disabilities in children. As Kenna’s primary neurologist, I have seen her family tackle these medical challenges head-on and they have been constant advocates for her health care through numerous prolonged complex hospitalizations. Despite these difficult times, they always have such a positive attitude that is contagious to everyone around them. It has truly been a blessing to be a part of Kenna’s care team here at INTEGRIS Health.”
As if the intellectual disabilities and developmental delays were not enough, Angelman syndrome also causes neuromuscular weakness and poor muscle tone. Because of this, Kenna experienced significant sleep apnea.
“Kenna’s voice box, or larynx, was so floppy that when she was three weeks old, she needed urgent airway surgery to help her breathe better,” said Paul Digoy, M.D., a pediatric otolaryngologist.
Since then, Kenna has had eight to 10 different airway surgeries to improve her breathing. All of those procedures were done at INTEGRIS Health Baptist Medical Center.
To complicate things even further, Kenna also has a rare condition called gastroparesis which is delayed gastric emptying with intestinal pseudo-obstruction.
“What that means in layman’s terms is that Kenna is unable to digest and absorb nutrition sufficiently,” said Steven Nye, M.D., a pediatric hospitalist with INTEGRIS Health Children’s. “Her stomach doesn’t empty food into her small intestine properly and her intestines don’t like to push food through which causes her to suffer from constipation-like symptoms.”
To eat, Kenna is dependent on a tube that was placed when she was only four months old. Just last year, she had a central line surgically placed into her chest and now receives the majority of her nutrition via that central line.
To add insult to injury, Kenna developed toxic megacolon from Clostridium difficile (C. diff) colitis in 2021. C. diff colitis is an inflammation of the colon that results from disruption of normal healthy bacteria, often from antibiotics. Symptoms include diarrhea, belly pain and fever. It can cause severe damage to the colon and even be fatal.
“Kenna got so sick from C. diff that we almost lost her,” her mother remembers. “Her colon was close to rupturing. We spent two full weeks in the hospital. The only reason she is here today is by the grace of God and the skill of the nurses, doctors and specialists at INTEGRIS Health.”
The treatment for C. diff and its symptoms is hard on the body. It takes multiple doses of antibiotics and steroids to treat the infection. Kenna’s body started to have auto-immune responses; she developed arthritis in her joints and required steroids and a medication similar to chemotherapy to help reverse the effects of the auto-immune response.
Kenna started seeing Ankur Rughani, M.D., a pediatric endocrinologist at INTEGRIS Health Children’s in 2022.
“I have been privileged to care for Kenna’s endocrine system as a member of her multidisciplinary team,” Rughani said. “Although Angelman syndrome does not typically present with endocrine or hormone issues, Kenna’s MRI of her brain suggests that she may be at risk of developing pituitary hormone defects that can affect a lot of different hormones like thyroid hormone, growth hormone and cortisol, a stress hormone, important for maintaining blood sugars and blood pressures. So, she’s required close monitoring for these issues to help optimize her growth and well-being.”
Chelsea put it this way, “We like to say her adrenal glands were ‘sleeping’ and after a year and a half of being monitored by Dr. Ruhgani her adrenal functions began to function normally and now she no longer requires any emergency adrenal medications.”
Today, Kenna is growing and thriving well. She has beaten the odds every day since the day she was born, and her parents are grateful for that fighting spirit. They say her biggest motivator has been her older brother, Kaiden, who is nine. Just like any younger sibling, Kenna wants to do anything he can do – maybe even better.
