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An Update from Maddux's Journey, Shared back in 2016 Original story: Little Survivor The last time we shared about our son Maddux’s journey, he was a vibrant 2-year-old who had undergone 10 surgeries at that time in his brief life. Today, at 10 years old, Maddux has experienced nearly 20 surgeries overall – still, almost all brain surgeries to address his hydrocephalus – and at 3 years old, in addition to his spina bifida, achondroplasia, and hydrocephalus diagnoses, he received another one, Epilepsy, after experiencing two focal seizures. Nevertheless, he is a strong soul who continues to defy the odds! These days, you can find Maddux on the ball field where he is currently entering his 4th season as a baseball player for our local Little League’s Challenger Division. A fan of all sports, Maddux loves playing, watching, and even attending live sporting events any chance he gets! Last summer, he even had the opportunity to participate in his first Angel City Games in Los Angeles, where he tried out and discovered a love for wheelchair basketball. He even met Paralympic Gold Medalists, Ezra Frech and Matt Scott (Matt was also born with spina bifida like Maddux!). Maddux continues to have twice-weekly physical and occupational therapies to help him build muscle tone and develop the necessary skills needed to be independent and to continue to thrive in everyday life. He lives life with a positive and upbeat energy and outlook. He has an incredible support system at school, at home, and in the community who are all rooting for him!

Different doesn’t mean less happy My life perspective completely flipped the day my baby girl had her first ear surgery. A little bit of our back story, Camilla had recently been discharged from the NICU after a 118-day long stay. During an in-home visit with a vision specialist, we found out Camilla was blind. We knew something was off with her eyes, but blind?!?! How??? So many other things were going wrong in her little body, how could her eyes be failing her too? I felt like God had no mercy on our family and that we couldn't catch a very well-deserved break. My heart was shattered that day. Fast forward to surgery day, I was sitting in an incredibly stuffy waiting room where time seemed to creep by at an impressively slow speed. My sedated Camilla was down a distant sterile hallway surrounded by a medical team determined to figure out why she couldn't hear. Today was the day I'd find out if my baby was blind AND deaf. I felt like the world was falling apart in slow motion. I went up to a different part of the hospital that was usually empty to spend the next several hours of my waiting time. A few moments later, a dad and his blind son sat next to me. I felt frozen in time like their existence was a preview of my reality. It was agonizing. But then something amazing happened. The blind boy listened to IV poles rolling by and asked his dad to explain what was going on. A sickly man, who looked like he was wasting away and waiting to die, lowered his head as the dad explained "Someone is walking by and it looks like he has cancer". Without hesitation, the blind boy leaped to his feet. He enthusiastically began to jump, clap, and cheer for a brave stranger fighting death. The man's eyes brightened, his mouth found its long-lost smile, and he stood a little taller. As I watched this blind boy create happiness and hope out of thin air, I realized something, there is joy to be found in a life that is different. Yes, my life will have its challenges, but it will also have its magic. I am a lucky lucky mom❤️‍🩹

I Thought Pain was Normal I have always led an active lifestyle, running, hiking, and playing tennis, and soccer since childhood. Despite staying active, I often experienced pain in my legs and thought it was just a normal part of being active. It wasn’t until college that the pain became severe enough to make me question whether it needed medical attention. Pain and its Effect on Daily Activities The pain eventually began interfering with even the simplest daily activities—like putting on pants or stepping in and out of the shower. Fatefully, I was studying to become an occupational therapist, a profession dedicated to helping people engage in meaningful activities of daily life. Yet here I was, struggling to engage in my own favorite activities and facing difficulty with basic tasks because of the pain. My First Diagnosis Right after college, the pain in my hips became unbearable. After consulting with an orthopedic surgeon, I was diagnosed with femoroacetabular  impingement (FAI) and a labral tear in both hips. Essentially, the head of my femur wasn’t sitting properly in my hip socket, which caused a tear in the cartilage around the joint. I underwent three arthroscopic surgeries—two on my right hip and one on my left. Though the surgeries provided some initial relief, the pain never fully went away. The Answer to My Pain: Miserable Malalignment Syndrome Three years later, I could barely walk because of the pain. My legs looked and felt crooked, and my knees knocked together. I consulted several doctors before finding one who diagnosed me with a condition called “ miserable malalignment syndrome .” Despite its unfortunate—and accurate—name, I was relieved to have a diagnosis after years of struggling with chronic pain. What is Miserable Malalignment Syndrome? Miserable malalignment syndrome (MMS) is a condition in which the bones in the legs are abnormally rotated. In my case, my femurs (thigh bones) pointed inward, while my tibias (lower leg bones) pointed outward, causing significant pain in the hips, knees, and ankles. My Surgical Journey Since the start of my journey, I have undergone nine surgeries, with four more to go. Four of these procedures are " osteotomies ," in which my femurs and tibias are surgically broken and realigned, then stabilized with plates and screws. In addition, I will need hardware removal surgeries and labral  reconstructions —a procedure where the torn cartilage in my hip joint will be removed and replaced with a cadaver labrum. Finding Purpose Through the Pain As I approach my tenth leg surgery and reflect on my journey so far, I have come to realize how much I have learned along the way. There were many times when I felt like giving up—both on life and on my recovery—because I couldn’t engage in those things I loved the most. My path out of despair was finding  purposeful and meaningful activities in my daily life, including beginning a book about my MMS journey, writing poetry, learning a new language, and educating others about this condition on my Instagram account and through podcasts. This emphasis on finding purpose is also a core principle of occupational therapy. Healing Through the Break Sometimes, we need to be broken in order to heal. My legs were surgically broken so they could be put back together. Like a bone mending after breaking, I am growing stronger with each day of recovery. Although I have felt both physically and emotionally broken at times, I know that staying engaged in meaningful activities will help my healing process.

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