Life At 3 With A Degenerative Disease

Álvaro is 3 years old and he’s a born fighter. From an early age, he’s had to cope with situations that many of us could not stand.
When he was 9 months old, the doctors diagnosed him with a rare degenerative muscular dystrophy called congenital laminopathy. As a consequence of the disease, Álvaro’s muscles, both body and heart, are strongly impacted.

Álvaro’s illness is a deadly one. There are no more than 50 cases in the whole world, and for this reason neither the public institutions in Mallorca (where he lives), nor pharmaceutical companies are willing to help. There simply is no global investigation on this type of rare disease.

At first, Álvaro’s parents felt hopeless, and did not dare to think of what his future might be. As a parent, when you learn that your child’s life expectancy is around 15 years, that your child is going to lose all strength in his arms and legs, that his heart will give in…you feel desperate.

But they decided to fight as much as they could, for their little boy and all the children out there in Spain and in the world, may they be diagnosed or not. They fought so hard, and talked so much about their son and his disease that they collected enough money to investigate the heart of Laminopathy patients. A team of doctors in Barcelona will be investigating their disease for 3 years, costing as high as 34,000 euros per year.

To follow Álvaro’s journey through life you can read his stories on his Facebook page: https://www.facebook.com/lafuerzadealvaro/timeline
Álvaro’s parents have also built a strong community with their donors on a platform called “Teaming” where all donors give 1€ a month: https://www.teaming.net/lafuerzadealvaro
All donations go to the research on Álvaro’s disease.

More info: teaming.net