International Niemann–Pick Disease Alliance

Sibling Spotlight: Sara

As part of this year’s Niemann-Pick Disease Awareness Month, we are putting the spotlight on siblings as we feel they are often a huge support to both their brother or sister, as well as the broader family. They are also some of the strongest advocates out there, and that’s why we are so proud of them and they deserve this platform! 

Sara es una hermana dedicada a su hermano. Ellos son mellizos y siempre han estado juntos para todo, ¡allí donde vaya Álvaro, está Sara! A ella le cuesta expresar sus sentimientos, pero los demuestra en su día a día, ayudando a todas las personas que quiere, en especial a su hermano. Sara realizó junto con toda su clase un libro de poemas sobre historia, 74 poemas que cuentan la historia española desde la prehistoria hasta la edad contemporánea. Cuando salió a la venta, cada niño de la clase tuvo que elegir una asociación pequeña a la que se donaría el dinero de las ventas del libro. Aquí es donde Sara comenzó la lucha para su asociación saliera ganadora y consiguió que la ANPF quedara entre las 6 finalistas.
Entonces, Sara se puso en contacto con todos sus familiares, amigos, y todas las personas que conocía, para que votaran por su asociación y por su hermano. Finalmente, después de mucho esfuerzo, Sara salió ganadora y le hicieron un bonito homenaje en su colegio. Además, en la contraportada del libro aparece el nombre de la asociación junto con una breve introducción y el contacto, ¡nada mejor para crear conciencia sobre la enfermedad Niemann-Pick!
Después, su mamá tuvo que ir a explicar a toda su clase en qué consistía esta enfermedad, quien adaptó una fabula para que los niños comprendieran el alcance y la afectación de la misma. Sara estaba muy orgullosa y feliz de haber conseguido esto por su hermano y de ver a su mamá en su clase delante de todos sus compañeros, y seguirá luchando al lado de su hermano ¡¡SIEMPRE!!

Sara is a dedicated sister to her brother. They are twins and have always been together for everything, wherever Álvaro goes, Sara is there! It is difficult for her to express her feelings, but she shows them in her daily life, helping all the people she loves, especially her brother. Together with her entire class, Sara created a book of poems about history, 74 poems that tell Spanish history from prehistory to the contemporary age. When it came out, each child in the class had to choose a small association to which money from sales of the book would be donated. This is where Sara began the fight for her association to emerge as the winner and got the ANPF to be among the 6 finalists.
So, Sara contacted all her family, friends, and everyone she knew, to get them to vote for her association and her brother. Finally, after a lot of effort, Sara was the winner and they gave her a nice tribute at her school. In addition, the name of the association appears on the back cover of the book along with a brief introduction and contact information, nothing better to raise awareness about Niemann-Pick disease!
Afterwards, his mother had to go explain to her entire class what this disease was, and she adapted a fable so that the children understood the scope and impact of it. Sara was very proud and happy to have achieved this for her brother and to see her mother in her class in front of all her classmates, and she will continue fighting alongside her brother ALWAYS!!

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