Puestos

In our fast-paced world, pausing to express gratitude can often be overlooked. Yet, taking the time to acknowledge the efforts of those around us is crucial, especially when it comes to the unsung heroes who dedicate their lives to the care of children with rare incurable disorders. These caregivers embody resilience, compassion, and unconditional love, providing an invaluable lifeline to both the children and their families. Despite their steadfast dedication, these caregivers often go unrecognized, their tireless efforts fading into the background of everyday life. Caregiving for a child with a rare disorder is not just a responsibility; it is…

The holiday season is a time for giving, but when a child is terminally ill, traditional gifts may not feel appropriate or meaningful. Finding the right gift can be challenging as families are often focused on comfort, connection, and the time they have together. Gifts that bring joy, create memories, or provide comfort can be incredibly special. Here are some thoughtful and compassionate gift ideas for terminally ill children and their families during the holiday season. 1. Gifts of Time and Support Often, the most valuable gift you can give is your time, care, and support. 2. Memory-Making Gifts Creating lasting memories…

The holiday season is traditionally a time of joy, celebration, and family togetherness. But when your child is terminally ill, it can feel like an emotional balancing act. Navigating this time of year may bring up complex feelings of sorrow, love, hope, and fear. Yet, the holidays can still be meaningful and filled with moments of connection and comfort. 1. Give Yourself Permission to Feel All Emotions The holidays may bring up a wide range of emotions—joy, sadness, gratitude, fear, and everything in between. It’s important to allow yourself and your family members the space to feel whatever arises. You don’t…

Se calcula que el veintisiete por ciento de los niños viven con una o más enfermedades crónicas. Las enfermedades crónicas son las que duran más de varios meses o las que tienen una curación imposible. La mayoría de la gente es muy consciente del impacto que los síntomas físicos y el tratamiento pueden tener en la vida del niño enfermo. Sin embargo, la enfermedad cambia la vida de todos los miembros de la familia del niño enfermo, incluidos los cuidadores y los hermanos. La vida de los hermanos puede verse afectada de muchas maneras: los padres pueden tener que pasar una cantidad desproporcionada de tiempo con el niño enfermo, acudiendo a las citas médicas y...