Collected
0€
To benefit
GOBI MARCH
I am going to run 250K in the Gobi Desert (Mongolia) to raise funds to help children affected by Butterfly Skin.
Cause lead by
Category
I no longer run just for myself. And never alone.
When you have butterfly skin you are special: they must deal with the pain of torn skin. You were born to be a warrior. The real ones. One of those who does not give up because he must cross a desert every day. He does it.
The smiles of these boys and girls multiply our happiness exponentially.
Because having butterfly skin is not a stigma, it is a painful challenge, yes. Giant. To which we can contribute our grain of sand and help them...
I no longer run just to make my challenge a reality, I run to know that we will all find a solution and that one day, not too far away, you will be able to run like me.
My challenge, so insignificant, becomes with them a dream to be achieved at all costs.
I will run in the Gobi with my heart to arrive knowing that we all fight together for its remedy.
They will run in my heart as I take the strides it takes to cross the Karakorum Desert in Mongolia.
Thank you very much for supporting this cause.
Imagina no poder abrazar a tu bebé por miedo a hacerle daño. La Piel de Mariposa es una enfermedad de tipo genético, rara e incurable que provoca una extrema fragilidad de la piel, causando heridas y ampollas por todo el cuerpo ante el más leve roce. Su piel es tan frágil como las alas de una mariposa
Una de cada 227 personas somos portadoras del gen defectuoso que provoca la enfermedad, por lo que esta puede irrumpir en cualquier familia de forma inesperada. La Asociación Piel de Mariposa (DEBRA España) es una organización sin ánimo de lucro que trabaja para mejorar la calidad de vida de los afectados y sus familias. Tú también puedes aportar tu granito de arena. www.pieldemariposa.es
About DEBRA, the Butterfly Children Charity:
Imagine not being able to hug your baby because you are afraid of hurting it. Because it was born with a rare genetic condition called Epidermolysis bullosa (EB) also known as Butterfly Skin. An incurable condition that causes blisters and wounds with the slightest touch. The skin is as fragile as the wings of a butterfly. DEBRA, the Butterfly Children Charity is a non-profit organization that works to improve the quality of life of those affected and their families.
If you would like to know more about DEBRA, the Butterfly Children Charity and our work please visit www.butterflychildrencharity.com
