Italian dinner on Jan. 27 to support toddler's recovery from stroke 'Support Landon's Journey': Boy's therapy sessions to begin in February
Landon Schust (left) with his twin, Parker. "He wants to do whatever Parker does, and he will do it," says his mom, Kendra Schust. "He’s one strong boy!" (Photo provided)
By Geri Corey GOSHEN — An incredible feast, “Italian Dinner Night to Support Landon’s Journey,” is being held from 3 to 6 p.m. on Sunday, Jan. 27, at Goshen’s First Presbyterian Church, 33 Park Place. The dinner offered in the church’s Fellowship Hall will be plenty of tempting Italian dishes, including chicken Parmesan, baked ziti, lasagna, and sausage and peppers, served with a fresh salad and bread and butter. Delicious desserts will complete the meal. The price for this full meal is an unbelievable $10 for adults; $5 for children 10 and under; $10 for take-out. Tickets will be sold in advance. With limited space, early reservations are recommended. Insurance not enoughWhy is this delightful dinner being held to support “Landon’s Journey?” Who is Landon? What is his journey? Landon is an adorable two-year-old boy who has physical disabilities as the result of a hemorrhagic stroke on the left side of his brain that caused significant volume loss of the left hemisphere of the brain and weakness to the right side of his body. As soon as the stroke was detected through an MRI, he began physical therapy at home, which is still ongoing. But now he has the opportunity to attend the Neurological and Physical Abilitation Center at the Boston site. Referred to as the NAPA Center, it offers intensive therapies in unique, diverse and innovative ways for children with neurological issues. According to Landon’s mom, Kendra Schust, “This program lasts for three weeks, four hours a day where Landon will participate in intensive therapy to challenge him more and help him reach potentials that are untapped due to limited resources in his current therapy programs.” His NAPA therapy sessions are scheduled for Feb. 18-Mar. 8 and Aug. 18-Sept. 6. Since insurance won’t cover the cost of the initial program of $10,000, combined with $10,000 for a second session, family and friends of parents Kendra and Timothy Schust have joined together to help meet expenses by organizing the Italian dinner. All proceeds will support the Schusts’ efforts to enroll Landon in the NAPA program. Landon and his twin brother, Parker, were born seven weeks prematurely on Nov. 20, 2016, each weighing less than four pounds. In different degrees, both boys had some early difficulties, like being jaundiced, having feeding issues, and being tongue-tied and lip-tied. After Parker’s problems were resolved, he was fine to be sent home from the hospital. With swallowing and gagging issues from birth, Landon needed to be on a feeding tube, and with apnea — a period when breathing stops — and bradycardia —a slow heart beat caused by a drop in blood oxygen level — to deal with, Landon’s issues kept him in the hospital for a longer period of time. In fact, he came home with a sleep apnea monitor. “I had to take a course to learn how to use it. It was a little frightening, sounding like a fire alarm," said Kendra. He also was on caffeine to control the bradycardia. Frightening seizuresAt home, Landon was doing “amazingly” well, said Kendra, “until he was three months old and we noticed he wasn’t using his right arm or leg.” This is when an MRI revealed that he'd had a stroke. More bad news came when on Dec. 24, 2017, Landon was flown to Westchester Medical Center while having an uncontrollable seizure. After testing, he was diagnosed with epilepsy. This episode was followed by two more prolonged seizures, one occurring in April and one in October 2018. Physical and occupational therapy that Landon is getting at home has helped him to attain milestones, starting with learning to roll over, sit up, babble, smile, and even stand up. “Some of us take for granted the simple milestones our babies hit," Kendra said. "Landon has shown us differently. At such a young age, he’s had to go through so much and fight for every milestone." She said doctors thought he might never walk, or walk only with the help of a walker, but Landon proved them wrong. At 13 months he was officially standing unassisted, and now, said Kendra, “He’s a runner! It’s hard to keep up with him.” Watching his brother, Parker, and trying to keep up gives him great motivation, she said. Making progressThe stroke caused Landon’s right arm to lay flat against his side with his hand pointed outward. Now, through therapy, his hand is turned in the way it should be, and he has use of four fingers. But his thumb is still giving him trouble. “Landon still has a long way to go, but he’s making progress,” said Kendra. He’s also able to vocalize, having a vocabulary of 60 words. “He’s a fighter,” said Kendra. “He doesn’t take ‘no’ for an answer. He wants to do whatever Parker does, and he will do it. He’s one strong boy! I want to be a strong mom for him. I have learned patience. It takes him time, but he does it.” Even with his hard work and dedication in his hours of therapy every week, Landon continues to face lifelong struggles due to his brain injury, she said. He falls frequently, getting banged and bruised, He still has difficulty using his right hand. He gets frustrated that he can’t do everything and has to work so hard at what comes easily to his brother. At this time, muscles in his hips and right calf and arm are super tight, and he wears a Benik thumb splint at night to give his hand muscles a good stretch. The Schusts are hoping to tap Landon’s so far unrealized potential through exercises at the NAPA Center. While there, he’ll engage in the Cuevas Medek Exercise (CME), a type of therapy that manipulates tight muscles and allows the once stretched-out muscles to gain control of the trunk, so necessary for sitting, standing, and balance. Strength will give him control over his body and give him a fuller life. “He’s such a happy kid, so adaptable," said Kendra. "I couldn’t ask for a better kid to walk this journey with.” To reserve your spot at this hearty Italian dinner and support Landon’s journey to better health, email Kendra Schust at Kendra.firstname.lastname@example.org.