HONOLULU (KHON2) -- Rachel Kondo, creator and head writer of the hit series Shogun, has never shied away from confronting life's most difficult challenges. Growing up on the island of Maui, Kondo was always close with her older brother, Aaron, who has lived with muscular dystrophy, a rare genetic disorder, for much of his life. Despite Aaron's condition, Kondo speaks of him not just as her brother, but as an inspiration. “I’m extremely proud of my brother,” Kondo said. “He’s been through so much, but he’s never let his condition define who he is. He’s lived a full life, and I mean full, even with the challenges he faces every day.” Aaron was diagnosed with muscular dystrophy at the age of four. At the time, doctors couldn’t identify which of the nine forms of the disorder he had; so, it wasn’t until Aaron was in his 20s that they were able to confirm that he has Emery-Dreifuss muscular dystrophy (EDMD), a rare form that impacts the heart. The condition weakens muscles throughout the body, leads to cardiac complications and is often progressive. Not long after his EDMD diagnosis, Aaron received a pacemaker and defibrillator to help manage his heart’s function. “The doctors told him, in his 40s, definitely before his 50s, he’d need a heart transplant,” Kondo explained. “We’ve known for years this day would come.” Kondo said that despite the heavy prognosis, Aaron continued to live life with relentless determination. He worked at Maui High School for more than 20 years, was a devoted father to his three children and kept himself active in his community. “Honestly, my brother’s life has been inspiring. He’s never let muscular dystrophy take away his spirit,” Kondo said. “I don’t think people realize how hard he’s worked just to live a normal life, especially with everything his body has been going through.” Kondo’s words are particularly powerful considering the hurdles Aaron has faced. For years, he had friends and classmates with similar conditions, many of whom didn’t live to see their 20s. In stark contrast, Aaron lived a life full of accomplishments. But in recent years, his condition has taken a dramatic turn. “December 2023 was a turning point,” Kondo recalled. “Aaron had a catastrophic stroke while in Wichita, Kansas; and that was just the beginning. In January of 2024, he had two massive brain bleeds. That left him immobile and non-verbal.” The Kondo family found themselves at a crossroads. After a year of working to get Aaron back to Hawaii, the love and support from their Maui community provided a source of strength. Get Hawaii's latest morning news delivered to your inbox, sign up for News 2 You “When we finally brought him back home, it was like a miracle,” Kondo said. "I have a picture of him emerging from the plane, and his face is just beatific. It's just soaking up that Hawaiian sun; I didn't know if he thought he would ever feel that again. There was an outpouring of love and support from his community. It was overwhelming in the best way possible.” But it wasn’t just the community’s embrace that gave hope to the Kondo family. It was a new, unexpected connection with Agata, a physiotherapist who practices in London. Agata, who had visited the family as a guest of a mutual friend, saw an opportunity to help Aaron through her unique approach to therapy. “I’ve been a physiotherapist for more than 20 years,” Agata said. “I’ve worked with both children and adults, and my philosophy has always been to see the person as a whole, not just as a body to be treated. That’s especially important with complex patients like Aaron. He needs more than just physical exercises. His whole body, his mind, and his spirit need attention.” Agata’s frienship with the family brings her to visit; and during those visits,, she generously shares her expertise, which makes a big difference in Aaron's recovery. “There’s something about connection in therapy,” Agata explained. “When you connect with a person on a deeper level, you can see a profound difference in their response. I’ve worked with Aaron on his hands, for example, because he needs strength there just as much as in his legs.” Her approach has produced remarkable results in both Aaron’s physical movements along with his emotional and mental well-being. “I remember the first time we saw Aaron move his right hand. We hadn’t seen him move it in almost a year,” Kondo said. “It was a huge moment for all of us, and I credit Agata for bringing that back.” What’s unique about Agata’s therapy is the holistic nature of her methods. “It’s not just about exercises,” she said. “It’s about understanding the needs of the whole person, emotionally, mentally, physically; and then, treating them with care and respect. The body responds to that kind of connection.” Kondo agrees as she has recognized how much Aaron’s recovery has been aided by his return home to Maui. “Hawaii has this incredible energy,” she said. “It’s not just the beauty of the land, but the people, the culture, and the way everything feels connected. It’s as if being back on the island has helped heal something inside of him.” But even as Aaron takes small steps forward, there are still many challenges ahead. While the family’s emotional resilience is evident, they continue to navigate the complexities of Aaron’s care, especially with regard to his heart transplant. “The doctors removed him from the transplant list, for now,” Kondo explained. “His condition is too unstable, but we’re doing everything we can to get him stronger. It’s tough, but we’re not giving up.” She went on further to explain. “His hands, his legs, his ability to communicate -- everything matters,” Agata said. “We take things one step at a time, but the goal is to give him the best quality of life possible.” Despite the uncertainty, Kondo remains hopeful for the future. “We’re a family,” she said. “We’re doing this together, and we’ll find a way. We’re not just looking at therapy or medical treatments. We’re looking at every possible avenue for healing: physically, emotionally and spiritually.” As the Kondo family works through the complexities of Aaron’s health and recovery, they continue to lean on their community, their faith and each other. “I’m incredibly grateful for all the people who’ve been a part of this journey,” Kondo said. “We’re not just a family going through something difficult. We’re a family supported by so many people who care.” You can click here to read more about muscular dystrophy. Get news on the go with KHON 2GO, KHON's morning podcast, every morning at 8 Aaron’s story is one of resilience, love, and the profound importance of community. Though the road ahead is uncertain, the Kondo family remains steadfast in their belief that, with the right support and care, Aaron can continue to defy the odds. ...read more read less