A lot to smile about for Lakota Morquio Miracle

BY KATHERINE SEARS for the Lakota American 
lamerican@polarcomm.com   

     Chris Hendrickson is a miracle of sorts. At just over four feet tall, Chris lacks the height of a normal 17-year-old, but he’s not a normal 17-year-old. He’s spent more hours than one could imagine in hospitals, played hockey with TJ Oshie, started NFL weekly picks at Mayo Clinic, and is probably qualified to receive a medical degree from experience by now.

     Chris, a junior at Lakota High School, lives with a disease called Morquio Syndrome. He was diagnosed when he was two. The rare and progressive inherited disease occurs when the body does not make enough of an enzyme that breaks down cell waste. In turn, the waste builds up inside the cells, then collects in organs, bones, and other parts of the body, causing any number of issues to develop, such as curvature of the spine, enlargement of organs, or a heart murmur.

     Morquio affects every person differently and is an autosomal recessive trait, which means both parents must be carriers of the gene that causes Morquio for a child to have the disorder. It is estimated to appear in one in every 200,000 births, according to the Children’s Hospital of Philadelphia website. The lack of the enzyme in the cell leads the body to grow unlike others, inside and out. So, in Chris’s case, he is shorter than most his age.

     But, luckily for him and everyone who gets the privilege to meet him, his smile seems to have grown bigger and more contagious than anyone you’ll ever meet; his chuckle, as equally infectious; his humor, quick-witted. And his courage? It probably blows a lot of people twice his height and three times his age out of the water. Chris has had to be courageous all his life as he has had several surgeries and other treatments since he was young due to physical issues caused by the disease. There is no way to predict or treat symptoms of the disease until they occur, so first the issues were in his spine and then, his legs.

      When he was first diagnosed, he underwent a spinal decompression. Since that first surgery, he has had several others, which may be too many to count. When asked exactly how many surgeries he has had in his life, Chris answered “A lot.” The “a lot” included numerous sets of ear tubes, eight plates when he was 5 years old and bilateral tibial osteotomies when he was nine. This required the doctors to break his legs by cutting the bone and then reattach them so they were straight. Chris remembers this as his most painful surgery. There was also nerve damage from the surgery, but the nerve began to grow back within a couple of months, something that doesn’t always happen.

     He has also been in two separate studies on Morquio patients. He was followed at Oakland Children’s Hospital in California for two years as part of the Natural Progression on Morquio Study in 2011, and was accepted into a BioMarin study in Chicago in 2012 for people with less severe Morquio symptoms. In this study, he received either a single or double dose of a Vimizim infusion, an enzyme replacement therapy that helps slow down the progression of the disease, once a week.

     He would travel to Chicago every week for a year, then the second year, he traveled to Minneapolis each week. The drug was FDA approved on February 14, 2014, which meant Chris could then receive the infusions at a local hospital. He now receives the treatment in the comfort of his home once a week by a nurse. It typically takes five to six hours, so Chris attends school in the morning that day, then heads home at noon. He misses half a day of school each week, but is diligent in keeping up with his studies outside of school.

     Since October 13, Chris has been spending most of his time in a scooter, along with a halo attached to his head and a fuzzy, but itchy, vest around his torso. He isn’t supposed to be doing much so reading books on his Kindle and playing PlayStation has kept him somewhat occupied outside of keeping up with his schoolwork. His most recent surgeries included a spinal fusion and decompression and trachea reconstructive surgery, the latter being possibly the most important of the surgeries.

     “For people with Morquio, the trachea is more normal-sized,” said Chris’s mom, Denise Sundeen. “It’s like putting a straw in that’s too long and pressing down on it,” she added. Chris’s trachea had grown closer to full-size than the rest of his body, and had narrowed over time. Therefore, Chris hadn’t noticed that it was a little harder to breathe, or that the little cough to clear his throat every now and then was due to his bent trachea.

     Even though this is often common in Morquio cases, Sundeen said he didn’t display the classic signs of a blocked trachea. Usually, the person will have symptoms, such as sleep apnea or snoring. But in this case, Chris was evidence of the disease’s description — it affects every person differently. The fact that his trachea had an opening about 2 mm wide wasn’t discovered until he and his parents were seeking a second opinion about issues with his knees.

     Chris began using crutches full-time in January 2016 because his knees were no longer straight enough to walk on his own. As they were talking about the surgery recommended by Chris’s doctors at Mayo Clinic in Rochester, Minn., they also traveled to Wilmington, Del. to visit the number one Morquio doctor in the world. Here, they discovered that the state of his trachea posed a huge threat. It needed to be fixed. “A normal EMT wouldn’t have been able to stabilize or treat him,” said Sundeen. Basically, if anything were to happen to Chris that required medical attention, it would have been very hard to work with the nearly closed off trachea.

     The solution was to cut part of Chris’s trachea out and put the two open ends back together — a surgery that had been done successfully in only nine Morquio patients in the world before Chris’s. That surgery, in addition to the spinal surgery needed due to the compression of his spinal cord, required a handpicked team of doctors at Mayo Clinic to work on planning the operations, including Dr. Stans, who has been Chris’s doctor since he was diagnosed. The doctors built a life-size 3D model of Chris over the summer of 2017 to practice the surgery on and make sure everything would go smoothly when it came to the actual operation day.

     In total, Chris had four different specialty areas and five different doctors working with him for the surgeries. His case was so special that PBS’s Ken Burns filmed Chris and his doctors for a documentary about Mayo Clinic Burns is working on. If Chris were to end up in the final cut of the documentary, it wouldn’t make him famous, maybe just a little more famous.

     In 2015, the North Dakota Make-A-Wish Foundation granted Chris a once-in-a-lifetime wish. His wish was to meet the former Fighting Sioux forward TJ Oshie.
Not only did he and his family get to fly down to St. Louis to watch a St. Louis Blues practice and a game against the Montreal Canadiens, they also got to hang out and eat lunch with Oshie. Chris and his two brothers, Carter and Cole, even got to shoot some pucks with Oshie the morning before the game.

     Chris left with unforgettable memories and a jersey signed by Oshie, To my buddy Chris, it was fun hanging out!! Stay positive and always have fun!!

     When Chris was about to have his most recent surgeries, his mom got into contact with the ND Make-A-Wish Foundation, and then Oshie’s current team, the Washington Capitals. When Oshie heard from the Capitals’ management that Chris was about to undergo another round of major surgeries, he immediately remembered him and began talking all about Chris.

     After Chris returned home from Mayo, Oshie sent another jersey signed, To Chris, All the best! The story about Chris’s original encounter with Oshie exploded, getting picked up by several major media outlets and getting hundreds of thousands of shares of Facebook.

     Chris was all of a sudden famous, even getting asked for an autograph after someone recognized him when he returned to North Dakota.

     But this round of surgeries would come mostly without the fanfare. Although the operations were going to be quite serious, Chris said he didn’t worry too much. “I’m always a little scared before [surgery],” said Chris, “But I just wanted to get it done.” Denise also felt it was something that needed to be done, and that now was the best time to do it. “We have the best possible people working on it,” said Denise. “If we’re going to do it, this is the best time.”

     “I wasn’t so much worried it wasn’t going to work, I was just worried because they were major surgeries,” she said. In addition, Denise mentioned that Chris was very good at being vocal when communicating needs or concerns in the hospital with the doctors or nurses, which made her more comfortable as well. Oftentimes, Chris said he would ask what the nurse was going to give him and tell them he didn’t want any more pain meds or otherwise. “He spoke up for himself,” said Denise.

     On September 12, a halo was attached to Chris’s head to allow the doctors to slowly start to move his spine before the surgery. On September 18, Chris’s doctors performed the decompression in two areas of his spinal cord and the spinal fusion from his skull to mid back.

     The surgery was long, but successful.

     Due to the repositioning of the muscles in his spine, Chris suffered a lot of muscle spasms at first, as well as itchiness from the vest he had to wear with the halo. So they took to some creative methods of relieving the itchiness, including long Q-tips and a blow dryer on the cool setting. The doctors and nurses were impressed with their creativity, but Chris is happy that the itchiness has since subsided. Chris’s trachea surgery took place on September 29.

     During the surgery, an artery that was pushing against the trachea had to be relocated, along with the reconstruction of the trachea. Thanks to the prep work by the team of doctors, Chris’s surgery became the tenth successful trachea reconstruction in a Morquio patient. “It’s a lot easier to breathe now,” laughed Chris about the difference between before and after the surgery.

     Chris added that he likes to swim, sometimes miles at a time in the pool, and hadn’t thought about the fact that he was always so winded during his swimming workouts until they discovered his trachea was narrowing. Swimming helped keep his legs healthy, but he hasn’t been in the pool lately because of his surgery. “They [doctors] don’t want to say for sure when I’ll be able to swim again,” said Chris, but he is hopeful it will be before too long. When Chris was discharged from the hospital on October 13, he had been there a month and a day.

     His mom Denise and dad, Tom Hendrickson, had been splitting the time with him at the hospital. While there, Chris became acquainted with the staff and even started NFL Weekly Pick’em with the staff and other patients that he and his family organized every week. His brothers were also able to visit him in Rochester which helped pass the time and kept the family in good spirits.

     Chris came home with a halo, 26 screws in his spine, a plate in his skull, and two rods in his back. The halo and apparatus is made of carbon fiber and weighs less than five pounds. Although it was hard to adjust to at first, Chris, along with the help of his family, is getting along alright. He has only been able to be in two positions for about two months, either sitting in his scooter or laying down. If he wants to switch, someone has to pick him up and move him.

     It hasn’t been easy, but it’s provided the family some good laughs. Chris joked that his family was good at first with being gentle when laying him down, but as they’ve gotten comfortable with it, some of the transfers have gotten to be more like a throw. “Sometimes I’m like ‘AH what are you doing!’,” laughed Chris. But, it’s been so far, so good for Chris.

     At his checkup, his trachea was healing and he is scheduled to have his halo removed on December 20. A Christmas treat it will be for him as he misses doing everyday things and going to school, where he is active in student council and is the student manager for the baseball team.

     Chris said the hardest part of being in the halo and vest is not being able to do the simple things. “Not being able to move, doing simple stuff like combing my hair,” said Chris of the restrictions.

     But, he did get to go deer hunting again this year and filled his doe tag. His dad and uncle built him a shack with a chair that swivels 360 degrees and lead sled to put his .270 short magnum on. He has hunted out of the shack since he was 12 and has now shot three deer out of it.

     If all goes as planned, Chris will be back in school after Christmas break. Then, hopefully no more back surgeries. Chris will have to undergo leg surgery next summer. His legs will get halos from thigh to calf to slowly straighten them while minimizing nerve damage. He will again spend a few more weeks in the hospital and then wear the halos for a couple months. More surgeries will be added to Chris’s “a lot” list, but he is optimistic he will walk without crutches once again.

     Crutches or not, Chris will continue to bring a smile and laugh to friends and family, and hopefully some courage to anyone who may need it.