My son’s story begins at birth with meconium ileus (a warning sign closely related to cystic fibrosis). He underwent his first surgery at five days old, during which 30 cm of his intestine was removed, leaving him with a pediatric ileostomy for 45 days until his second surgery for its replacement. We had already had genetic testing done, receiving the results when he was three and a half months old, which came back positive for cystic fibrosis. That day was one of the most difficult, filled with feelings of nostalgia, guilt, and pain, without understanding why God, as parents, had given us this very difficult life test. We were unaware of the severity of this disease, which we learned more about as the days went by. However, our helplessness grew because we saw that in our country, Ecuador, the treatment, medications, and everything our son Liam needs are very limited; in fact, most of it simply doesn’t exist. Another aggravating factor is the lack of financial resources we have to deal with such a complex illness. The state doesn’t provide everything we need, so as the months have passed, we’ve adapted to a new way of life with faith in God, searching the world, knocking on doors, hoping for a ray of light, hope, and faith that will allow us to continue caring for Liam. Now, a year and a half after our son turns 18, we realize we’re not alone in this struggle. There are other people around the world with whom we can share our experiences, to be heard, and to learn from each other. Life is more subtle when we feel we have someone else to count on.
Greetings from Ecuador to all people with CF.
(248) 520-2329
