<div>Marylu’s Road to a Heart Transplant
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<div>On March 28, our beloved daughter Marylu was diagnosed with Histiocytoid Cardiomyopathy (HCM)—an extremely rare and life-threatening congenital heart disease that primarily affects infants, particularly females. It is characterized by abnormal histiocytoid cells in the myocardium, leading to arrhythmias and sudden cardiac events. HCM is often undetected until it's too late, with many cases only discovered during autopsy. Fewer than 100-150 cases have been reported worldwide, making Marylu’s situation incredibly rare and urgent.
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<div>But her battle began long before that diagnosis.
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<div>On January 9, at only 10 weeks old, Marylu suffered a sudden cardiac arrest at home. I immediately began CPR until paramedics arrived and rushed her to the hospital.
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<div>On January 10, she was placed on ECMO (a heart-lung bypass machine).
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<div>On January 22, she suffered a stroke, and the next day, January 23, she underwent her first open-heart surgery, where doctors implanted an ICD/pacemaker to manage her dangerous arrhythmias.
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<div>After weeks in intensive care, she was transferred to an inpatient rehab center on February 11.
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<div>On March 12, she was readmitted due to severe arrhythmias, and her ICD delivered over 300 shocks in 3 days—depleting a 14-year battery to just 8 months.
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<div>On March 14, she underwent ECMO support with her chest left open.
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<div>And on March 19, she was placed on the Berlin Heart BiVAD, a mechanical device that now keeps her alive while she awaits a life-saving heart transplant.
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<div>On April 16, she underwent diaphragm plication surgery to help her lungs and with her extubation.
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<div>Today, Marylu is 6 months old and a fighter. Marylu has endured more in a few months than most do in a lifetime. Her strength is beyond words, but this journey comes with overwhelming emotional, physical, and financial burdens.
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<div>We are asking for your help whether through a donation, a share, or a prayer.
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<div>From the bottom of our hearts, thank you for being part of her journey.
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<div>Please keep Marylu in your prayers:
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<div>Dear God,
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<div>Wrap Marylu in Your healing arms. Strengthen her heart, her body, and her spirit. Guide her doctors, comfort her loved ones, and light the path toward her recovery. May she feel hope, love, and peace each step of the way. Amen.
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<div>Thank you,
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<div>Perez-Muñoz Family
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<div>‐-------------------------------------------
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<div>El Camino de Marylu hacia un Trasplante de Corazón
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<div>El 28 de marzo, nuestra querida hija Marylu fue diagnosticada con Miocardiopatía Histiocitoide (HCM), una enfermedad cardíaca congénita extremadamente rara y potencialmente mortal que afecta principalmente a bebés, especialmente a las niñas. Se caracteriza por la presencia de células histiocitoides anormales en el miocardio, lo que provoca arritmias y eventos cardíacos repentinos. La HCM no se detecta hasta que es demasiado tarde, y muchos casos solo se descubren durante la autopsia. Se han reportado menos de 100-150 casos en todo el mundo, lo que hace que la situación de Marylu sea increíblemente rara y urgente.
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<div>Pero su lucha comenzó mucho antes de este diagnóstico.
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<div>El 9 de enero, con solo 10 semanas de vida, Marylu sufrió un paro cardíaco repentino en casa. Inmediatamente comencé a realizarle los primeros auxilios hasta que llegaron los paramédicos y la llevaron de urgencia al hospital.
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<div>El 10 de enero, fue colocada en ECMO (una máquina de bypass cardiopulmonar).
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<div>El 22 de enero, sufrió un derrame cerebral, y al día siguiente, el 23 de enero, se sometió a su primera cirugía a corazón abierto, donde los médicos le implantaron un desfibrilador/cardíaco (ICD)/marcapasos para manejar sus peligrosas arritmias.
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<div>Después de varias semanas en cuidados intensivos, fue transferida a un centro de rehabilitación el 11 de febrero.
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<div>El 12 de marzo, fue readmitida debido a arritmias graves, y su ICD/marca pasos le dio más de 300 descargas en 3 días, agotando una batería de 14 años a solo 8 meses.
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<div>El 14 de marzo, fue sometida a soporte ECMO con el pecho abierto.
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<div>Y el 19 de marzo, fue conectada al Berlin Heart BiVAD, un dispositivo mecánico que ahora la mantiene con vida mientras espera un trasplante de corazón que le salve la vida.
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<div>El 16 de abril, se sometió a una cirugía de plicatura del diafragma para ayudar sus pulmones y con su extubación.
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<div>Hoy dia, Marylu tiene 6 meses y es una luchadora. Marylu ha soportado más en unos pocos meses que la mayoría en toda una vida. Su fortaleza es indescriptible, pero esta situacion conlleva cargas emocionales, físicas y financieras.
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<div>Les pedimos su ayuda, ya sea mediante una donación, compartiendo su historia o enviando oraciones.
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<div>Desde el fondo de nuestros corazones, gracias por ser parte de este camino.
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<div>Por favor, mantengan a Marylu en sus oraciones:
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<div>Querido Dios,
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<div>Envuelve a Marylu con Tus brazos sanadores. Fortalece su corazón, su cuerpo y su espíritu. Guía a sus médicos, consuela a sus seres queridos y alumbra el camino hacia su recuperación. Que sienta esperanza, amor y paz en cada paso del camino. Amen.
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<div>Gracias,
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<div>Familia Perez-Muñoz
</div>

Anonymous

Tara Doherty

Isabel Galindo

Lina Shuster

Lourdes Arena

Citlalin Flores

Karen Eggleston

Marylu’s Journey: The Wait for a New Heart”

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Marylu’s Journey: The Wait for a New Heart”

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