Lucy Belle McLaughlin was born with NKH or non-ketotic hyperglycenemia, a rare and terminal genetic disorder that causes the body to produce too much glycine. The glycine collects at the base of the brain, causing swelling and encephalopathy. It’s the same disease that took the life of Lucy’s older sister, Ellie Kate, a year after Lucy was born.
When their daughter Ellie Kate was born in 2005, Ryan and Michael McLaughlin had no reason to think anything could go wrong. They had a healthy little boy, Conner, who was 2. But even before they left the hospital, Ryan had a feeling something wasn’t right: Ellie Kate didn’t cry, and she slept all the time. “They kept telling me I had a lazy baby,” Ryan says. The couple kept pushing for answers, and when they took Ellie Kate back to the hospital a few days later, to their shock she was in critical condition and needed to be intubated. Terrifying weeks in the Oklahoma hospital followed; eventually, the doctors had done all they could and told the McLaughlins they could take their little girl off life support or fly her to Houston. At Texas Children’s Hospital, they finally got the diagnosis of NKH (Nonketotic Hyperglycinemia). Eventually, they took Ellie Kate home, but the family spent many days and weeks with her in the hospital in the years that followed.
Three years after Ellie Kate was born, the McLaughlins had another healthy baby boy, Henry. Then came Lucy Belle, unexpectedly, in 2011. NKH is so rare that, many times, patients die before it’s even diagnosed; it’s even more rare to learn an infant has the disease before birth. But genetic testing revealed that Lucy also had NKH. This meant the McLaughlins and their team of doctors had options.
“What if we make a plan and put her in the NICU right away and start her on meds right away?” Ryan says. “What if the outcome was different?”
Unfortunately, Ellie Kate died two days before Christmas in 2012. “They had one year together, and Ellie Kate loved Lucy,” Ryan says.
Most children with NKH, like Ellie Kate and Lucy Belle, do not live to see 5 years old. But this year, Lucy turned 10. Daily life is a challenge for the McLaughlins and the pandemic has been tough. With an immunocompromised child, isolation and quarantine have been a way of life, but COVID has prevented Lucy from attending school, where she receives most of her therapy and treatment. In the spring of this year, Lucy suffered an intense setback — a 12-hour seizure that left her with even further brain damage.
“She was overly flexible before, and now she is super stiff,” Ryan says. “Her legs are stiff and her feet are stiff. At first when she had the seizure, we couldn’t even move her legs to change her diaper.”
The doctor recommended several treatments to help with Lucy’s stiffness, but he said the best thing for her right now was water therapy. Though many had offered the McLaughlins their personal pools, getting to and from wasn’t doable for regular use. That’s when Ryan posted a Facebook message that caught the attention of SpaRetailer. It reads, in part:
“Our hearts are BREAKING for our daughter, over the pain she is experiencing. For Lucy, it hurts to sit, it hurts when she lies down; it hurts when we transfer her from place to place. I am hurting Lucy when I put her in the car seat and she’s hurting the entire time she is in the car. I am hurting Lucy while she’s in her bath chair, the entire time she is getting a bath (which explains why she screams during baths, when she used to LOVE them). What WON’T hurt Lucy? WATER, as in being immersed in a pool of water. In a pool, Lucy would be able to freely move without as much pain.”
Using industry connections to find a hot tub, even a used one, felt possible. We approached Bob Lauter, CEO of Master Spas, who agreed to try to find a 12-foot swim spa to donate.
With the help of sales and marketing vice president Kevin Richards, Lauter located a H2X Trainer 12 and got it to Oklahoma City. Local Master Spas dealer Ryan Frank of Aqua Haven did a site visit and began coordinating delivery and installation.
“I can’t believe Master Spas got this so quickly,” Frank says. “It was like pulling a rabbit out of a hat. We’re really happy to be a part of it.”
Daine Griffin, owner of Griffin Electric in Oklahoma City, donated his time to install the electrical hookup. “One of the goals in working for myself was so I can take advantage of opportunities like this,” Griffin says.
Spartan Pool & Patio poured and donated the concrete pad, and Northwest Crane Service donated more than half the cost of craning the swim spa over the McLaughlins’ house and into their backyard. Leisure Concepts sent a ModStep and two Smartop Vanish XL covers. A Sunday school class from Emmaus Baptist Church in Oklahoma City raised funds to cover materials and the crane expense.
Lucy’s father Michael McLaughlin was worried that when she first got in the swim spa, it would take her a while to get used to the environment, but, “Within a couple days, we noticed improvement,” he says.
Lucy’s physical therapist gave them exercises to do with her in the water, and they’ve been using the hot tub daily. Ryan says Lucy likes it and that it relaxes her.
There is no cure for NKH, so Lucy’s treatments are focused on managing symptoms and improving her quality of life. Her family hopes to see improved strength and range of motion so Lucy can eventually stand on her own.
The swim spa has become a place where the family can relax, whether it’s Ryan getting in for a few moments of peace after a long day, or Lucy’s adopted sister, Bowen, hopping in to “help” with her therapy.
“We’re just so grateful,” Ryan says.