International Niemann–Pick Disease Alliance
Niemann-Pick Disease Awareness Month is the perfect time to acknowledge the invaluable role that siblings play in providing support and love to their affected family members.
Cuando Alejandro tenía 2 añitos, llegó al mundo su hermana tan esperada, Natalia. Les encantaba jugar todo el rato, pero Alejandro siempre ha cuidado mucho de su hermana. Les encantaban las fiestas del cole ¡porque podían disfrazarse!
Alejandro siempre ha sido un niño muy bueno, todo lo que pedía su hermana se lo daba, y se lo sigue dando. A Natalia le encanta comer y él le regalaba sus galletas. Le encantaba coger a su hermana y acercarse al kiosko que tenían sus padres ¡para comer todas las chuches posibles!
Ahora Alejandro ha crecido y sabe todo a cerca de la enfermedad Niemann-Pick, no se pierde ningún detalle sobre los ensayos clínicos, las pastillas que se tiene que tomar su hermana y, por supuesto, ayuda siempre a su hermana y a toda su familia. Tres adjetivos que le describen son: responsable, humano y cariñoso.
“Todo se logra con esfuerzo y esperanza”, este es el mensaje que quiere mandar a todos los hermanos y familias afectadas por esta enfermedad.
English version:
When Alejandro was 2 years old, his long-awaited sister, Natalia, came into the world. They loved to play all the time, but Alejandro has always taken great care of his sister. They loved school parties because they could dress up!
Alejandro has always been a very good child, he gave her everything his sister asked for, and he continues to give it to her. Natalia loves to eat and he gave her his cookies. He loved to take his sister and go to the kiosk his parents had to eat as many sweets as possible!
Now Alejandro has grown up and knows everything about Niemann-Pick disease, he doesn’t miss any details about the clinical trials, the pills his sister has to take and, of course, he always helps his sister and his entire family. Three adjectives that describe him are: responsible, human and affectionate.
“Everything is achieved with effort and hope”, this is the message he wants to send to all the siblings and families affected by this disease
#NiemannPickAwarenessMonth #SiblingSpotlight #SiblingsSupport #INPDACommunity #INPDA