Iñaki, fue diagnosticado a los 2 años con Síndrome de Sanfilippo A; la sentencia dice “hasta la adolescencia”; lucharemos. Our story is not a Tale, it’s real life
'He will be a very strong boy' the Dr said. And he arrived with those big eyes, wanting to rule the world. I heard his first words, saw his first steps, I could see him discovering the world… Always smiling, shining…
Before turning
2, the worst nightmare for any mother began. He was diagnosed with a terminal disease and I was told to go home and enjoy him, as long as he could remember who I was… that he was going to suffer the indescribable and have a very short and painful life. The monster's name is Sanfilippo Syndrome type A. The most severe and devastating of these group of diseases. You can imagine the pain of a mother knowing your child will suffer and you could do nothing to stop it. In no time life was shaking, dreams were dissipating. And that hope and Iñaki’s bright eyes are the strength that allows me to get up every day. A strength that has turned into a fight. Iñaki is a happy child yet, with a very impressive strength; I always say that he is an old soul. But he has already started to lose habilities; so hard to see. This is my son Iñaki, he is 11 years old. This is me, Jenny, his mom asking for help…
