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We Were Told to ‘Go Home and Love Him’ — This Drug Let Our Son Thrive Instead скачать в хорошем качестве

We Were Told to ‘Go Home and Love Him’ — This Drug Let Our Son Thrive Instead 8 дней назад

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We Were Told to ‘Go Home and Love Him’ — This Drug Let Our Son Thrive Instead
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We Were Told to ‘Go Home and Love Him’ — This Drug Let Our Son Thrive Instead

Nathan Rothe was diagnosed with Duchenne Muscular Dystrophy when he was five years old. In this interview, Nathan and his mother, Jessica, share what it means to live with a diagnosis that comes with timelines no family should ever hear. When Nathan was first diagnosed, his parents were told he might stop walking as early as seven years old and likely would not live to see adulthood. After delivering that news, doctors told them there was nothing they could do — to go home, love him, and wait. Jessica describes how devastating that moment was, and how it still echoes years later. Duchenne is a progressive muscle-wasting disease. It affects every muscle in the body. Over time, boys lose the ability to walk, then lose upper body function, and eventually the disease weakens the heart and lungs. The heart is often what ends life. Nathan explains how growing up with Duchenne affected his childhood. He struggled to keep up with his peers and eventually needed mobility assistance. Still, he kept pushing forward. When he learned about a Capricor clinical trial in high school, it offered something rare — not a cure, but a chance to slow what was coming. After starting treatment, changes became noticeable. Physical therapists saw strength that had not been there before. Nathan describes stronger arms that allowed him to feed himself, play piano, sing, socialize, and live more independently. His mother describes something even more striking: stability. For years, Nathan’s function did not decline — something that is not typical for someone his age with Duchenne. Because of that stability, Nathan achieved things his family never believed were possible. He earned his driver’s license. He graduated from college. He lived in an apartment. He built friendships. He started a career. His life expanded instead of shrinking. Then everything changed. Due to regulatory and insurance barriers, Nathan was forced to stop the Capricor treatment in order to pursue another therapy. The decision was devastating. Shortly after stopping, his cardiologist detected worsening arrhythmias and directly connected the change to coming off the medication. What had been keeping his heart stable was gone. Jessica describes the heartbreak of watching something that was clearly helping her son be taken away — not because it stopped working, but because of process, rules, and delay. She explains that the data shows dramatic slowing of disease progression, especially in the heart, yet approval continues to stall. “This drug stops the disease,” she says. Nathan explains the fear of what comes next. Without this treatment, there are no real alternatives. Duchenne does not pause while paperwork moves slowly. Time lost cannot be recovered. Time is muscle. Time is life. They are not asking for miracles. They are asking for urgency. They are asking decision-makers to recognize what families and doctors can already see — that this treatment is preserving strength, protecting the heart, and allowing young men like Nathan to live fuller lives. If you are watching this, you can help. 👉 Contact your senators and members of Congress 👉 Ask them to push for faster approval of Duchenne treatments 👉 Tell regulators that cardiac stability matters 👉 Share this video so Nathan’s story reaches those with power Nathan and Jessica are speaking out because silence costs too much. Their family has lived the consequences of delay — and they know what is at stake if action does not come soon. This interview is about survival. It is about time. It is about giving families a chance before that chance is gone. Every share matters. Every voice matters. Every heartbeat matters. ❤️ This video is shared for patient advocacy and awareness purposes. It is not sponsored, paid for, or endorsed by Capricor Therapeutics or any pharmaceutical company. The views expressed are those of the individuals featured. Any treatments discussed may be investigational and not approved for general use.

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