On the 31st of July 2016 in Macaé/Brazil, André Arndt de Godoi, our little warrior was born. He was a true gift from God. In the beginning he seemed to be a healthy baby, but throughout the following months we noticed his movements were not following the development of regular babies. It was then, at 3 months old, we came into contact with a neuropediatrician and after numerous tests he was diagnosed with the degenerative disease Spinal Muscular Atrophy (SMA) type 1.
SMA directly affects the body’s motor neurons. This then causes the muscles to become weaker and eventually lose all mobility. This includes the muscles used in the respiratory system which are vital for life. Today André has a minimal range of movement. At 5 months, he went into cardiorespiratory arrest and he now has already been through two surgeries (tracheostomy and gastrostomy). Doctors have given André a life expectancy of 2-3 years.
SMA has no cure, but, a hope has arisen in us. The American laboratory Biogen has discovered a treatment for SMA, they have named it SPINRAZA (Nusinersen). This is not yet available in Brazil which makes treating the children here incredibly difficult. Unfortunately it is at a dire cost of 3 million Brazilian reals in order to get the medicine imported for use in Brazil.
In order to make this dream a reality and supply André with SPINRAZA, we need your help. Your contribution will directly affect his chance at a long life filled with mobility. Share our dream, help us save our son!
With great thanks and hope,
Wanderson and Juliane Arndt de Godoi