Córdoba, Espanya
Teaming Manager de 1 Grups
Teamer de 1 Grups
Des del 22-09-2021 ha aportat 16 €
Teaming Manager des de: 22/09/2021
Somos los papás de Victoria, una niña de casi 8 años con piel de mariposa y es por ella y por todos los afectados que luchamos día a día y la donación será para INVESTGACÍÓN.
Teamer des de: 22/09/2021
Martina is a Córdoba baby who suffers from a rare disease called SMARD1 known as Spinal Muscular Atrophy with Respiratory Difficulty, this disease affects one hundred children worldwide, being Martina the only one affected in all of Spain. Martina with only 3 years requires mechanical ventilation 24 hours a day to breathe, can not walk, or sit and feeds through a tube. THE PROCEEDS ARE FOR RESEARCH, a gene therapy tested on animals with promising result