If My Heart Fails, I’m Gone — Why Duchenne Patients Need Cardiac Treatments Now | Elijah Stacy скачать в хорошем качестве

If My Heart Fails, I’m Gone — Why Duchenne Patients Need Cardiac Treatments Now | Elijah Stacy

My name is Elijah Stacy. I am 24 years old, and I am living with Duchenne Muscular Dystrophy. In this interview, Elijah speaks with clarity and urgency about what Duchenne really is. It is a fatal genetic muscle-wasting disease. Boys are often diagnosed between the ages of four and six, after frequent falls or walking on their toes. By the time they are nine to twelve, most lose the ability to walk and become fully dependent on a power wheelchair. In their teenage years, they begin losing upper limb function. Then the disease reaches the heart and lungs. The heart is the number one cause of death in Duchenne. Elijah does not speak in hypotheticals. He speaks from lived reality. The average lifespan for someone with Duchenne is about 25 years old. Elijah is 24. He says plainly that he does not want to die — and that he does not believe he has to. For the first time, he believes there is a choice. Throughout the interview, Elijah stresses urgency. Duchenne patients do not have five or ten years to wait for another drug, another study, or another delay. There is a window where the heart can still be protected. Once that window closes, it cannot be reopened. If treatment is given too late, it cannot save the heart. That is why this treatment matters now. Elijah explains that the current regulatory focus is misplaced. Approval decisions are being tied to upper limb function, even though the treatment was intended to protect the heart. He says it clearly: if he loses his arms, that is one thing. If his heart fails, he is gone. Elijah explains that FDA-sponsored research has already identified the correct cardiac measurements to evaluate Duchenne progression, including left ventricular ejection fraction. These are the markers that predict survival. He points out that when those markers are compared to the data from this treatment, the difference is clear. The heart is being protected. He also shares why he was excluded from receiving the treatment himself. He did not meet upper limb strength requirements — even though the drug could still benefit his heart. His younger brother Kai was eligible. Elijah was not. He explains that this exclusion is not about science. It is about regulatory structure. “This is a regulatory issue,” Elijah says. As the interview continues, Elijah becomes even more direct. His life moving forward — whether he lives or dies — is being decided in Washington, DC. Those decisions are being made by people who will never meet him, never sit in his wheelchair, and never feel the weight of knowing time is running out. He calls on senators, members of Congress, regulators, and national leaders to act. He asks them to look at what truly matters in Duchenne: the heart. He asks them to approve a treatment that shows real benefit before more lives are lost. “This drug can save the hearts of patients,” Elijah says. “And it can save the hearts of those who love them.” If you are watching this, you are not a bystander. 👉 Contact your senators and representatives 👉 Tell them Duchenne patients do not have time to wait 👉 Demand approval pathways that prioritize survival 👉 Ask regulators to evaluate treatments based on cardiac outcomes Elijah is one voice — but he is asking for many voices to stand with him. His life hangs in the balance. So do countless others. 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.