Joseph Castillo and his 10-month old niece, Mikaela, are both learning to walk. For Joseph, it is a re-learning—reminding his muscles to move and spine to support his lengthy 18-year-old body. Born with a lipomyelomeningocele, a condition where an abnormal growth of fat attaches to the spinal cord, his mobility had gradually declined over the past few years, ultimately confining him to a wheelchair during his junior year of high school. “My mom always taught us: You don’t have disabilities, you only have capabilities,” he explains. “And, that life is full of choices. No matter what, you have to choose which path to take and how to react to what you’re given. We choose to keep going. Our family chooses to always move forward and enjoy our lives.”
Reading books telling of fantastical journeys, designing new toys for Mikaela, and playing videos games featuring agile avatars—hobbies he adopted to keep his mind active and occupied while the rest of his body sat in stillness. “Being in high school and a teenager is hard enough and then not being able to walk, it was an adjustment losing my independence,” explains Joseph.
Health has always been a family affair for the Castillos. Joseph’s mom, Christine, as well as his sisters and father, travelled all over the state and beyond looking for solutions. With Helena as home, the Castillos were venturing as far as Denver just to visit pediatric specialists. “We had seen dozens of physicians—one even told us he believed Joseph was faking his symptoms,” says Christine. “Imagine, a boy not being able to walk and run and do activities with his friends being told by a doctor that he was just pretending. No one could tell us why this was happening to Joseph.”
In May 2019, Joseph was referred to the Montana Children’s outreach clinic in Helena to see Kim Longcake, an ANP of pediatric gastroenterology, for some digestive problems that worsened since he lost his ability to walk. When Longcake evaluated Joseph and recognized the severity of his spinal issue, she consulted with Dr. Kelly Schmidt, pediatric neurosurgeon with Montana Children’s Specialists. Longcake coordinated admission for Joseph to Montana Children’s in Kalispell so he could undergo an extensive workup. This included imaging of his entire spine as well as an EGD and colonoscopy to evaluate his digestive issues. The spine imaging showed multiple congenital anomalies and a significant tethered spinal cord that could be contributing to Joseph’s digestive problems and almost certainly causing his gradual decline in mobility. “It was so great how these providers worked together to help us figure out the best road forward for Joseph,” Christine says. “And we were so thankful we could stay in Montana and just drive up to Montana Children’s to see Dr. Schmidt. Not a moment too soon either: As we were getting ready to go up to Kalispell, Joseph began losing feeling in his arms and having really bad headaches.”
Once Dr. Schmidt assessed the imaging results, in addition to a tethered spinal cord from residual spinal cord lipoma, she identified several other abnormalities which were likely contributing to his clinical picture. Because of Joseph’s symptoms and these findings, she felt surgery would be best in order to free the spinal cord from its attachment to the fat. In July of 2019, Joseph underwent this procedure at Montana Children's with successful results. Following surgery, Joseph was in less pain than before and standing tall, ready to walk again.
“Children born with a lipomyelomeningocele, often require multiple surgeries throughout childhood due to recurrent tethered cord symptoms that can worsen as they grow,” explains Dr. Schmidt. “Joseph’s case was unusual in that he had surgery as an infant, but never had surgery again until he was 18 and had been in a wheelchair for several years when previously he was walking.” Dr. Schmidt feels strongly that Joseph’s disrupted specialty care throughout his childhood—seeing multiple specialists out of state and in various different hospitals—prevented the severity of his condition from being recognized earlier. “Fortunately we now have Joseph and his family tied into multidisciplinary specialty care with Montana Children’s and he has a great prognosis,” she says.
Joseph’s condition is ongoing, but it is also continually improving. As his nerves awaken, adjusting to their new freedom, he is closely monitored by his Montana Children’s providers. “Even though Joseph was going to an out of state specialty clinic, there is wasn’t that personal care that he and his family needed,” explains Longcake. “Now, he’s not only able to continue his care within the state, but right here in his hometown of Helena. We have been able to truly coordinate multidisciplinary care for Joseph. Our outreach clinics help unify and advance the care for the pediatric patients in this state. I’m so proud of what we’ve built here with Montana Children’s and the positive impact we’re making with our outreach efforts. To simplify things for the Castillo family has been really rewarding.”
Kalispell Regional Healthcare officially opened Montana Children’s on July 1, 2019, as the first pediatric facility of its kind in the state. With the mission to improve patient access to specialty medical care throughout Montana, pediatric specialty regional clinics are currently offered in Polson, Missoula, Great Falls, Helena and Bozeman—and include specialty services in pediatric cardiology, pediatric endocrinology, pediatric gastroenterology, pediatric neurology, pediatric neurosurgery, pediatric oncology and hematology and pediatric surgery. Already, the 190,000 square-foot facility and its various outreach clinics have had a significant impact on children in Montana and their families.
Recently, Joseph returned to the main Kalispell facility to have a feeding tube placed in his abdomen to help him receive food and gain weight while his body continues healing. Although he’s 18 years old and nearing 19, he and his family asked to continue care with his pediatric specialty providers which helped assure him comfort and calm going into this new procedure. His positive outlook and lively persistence guide him through rough days with a smile on his face. “He’s been through a lot, but he’s still just so easy going,” says Christine. “We’re learning new things with the feeding tube and he’s walking so well with his new walker to keep him balanced while he gets stronger.”
Finishing out his senior year of high school is top priority for Joseph. He’s working through his classes and looks to his niece for inspiration when he needs a little encouragement to complete an assignment. The more free time he has, the more he and Mikaela can practice their dancing. “I refuse to say that I am ‘special needs,’” Joseph states. “I like to say I’m very special with needs. No one person is the same, we all have different needs, and that’s what makes us special. We’re all a gift to each other.”
Written By Dena Tomlinson
This article was originally published in the February 2020 issue of 406 Woman.