Written by Catherine, Lucus's mother
It was only one year ago that my little sunshine, Lucus, was born on April 14, 2008 at 6:15 am. He weighed 7 pounds 2 oz and looked so healthy and happy. It was the happiest day of our lives. Everything was going well and he passed all his tests, until they did the newborn screen, which I figured was just a routine checkup. We got released from the hospital, went home, and enjoyed our new little addition to the family.
One week had gone by with no result. The next week my doctor gave me a call asking me to meet with him at lunch time the next day. At that point I knew something was wrong because he wouldn’t tell me anything over the phone. The next day I met my doctor and we sat down to discuss the test result. At that point he announced to me that Lucus had a fatal disease, he had Cystic Fibrosis.
At that point I had no idea what Cystic Fibrosis was all about. My doctor told me I would need to meet with the genetic counselor at McMaster. I was starting to understand this condition was something to take seriously.
We went up to McMaster and met with the CF specialist. She explained what CF was and at that point I was really emotional, because I realized my son had a deadly disease that could not be cured.
Lucus was put on medication right away and he is followed every month. He gets a new medication at almost every visit. Lucus is doing very well at this point, and we keep our hope up for miracle cure.
When you get told that your child has a fatal disease you always think "Why my child?" which is exactly what I was thinking. It is hard to accept the fact that the child you carried for 9 months has this condition, and that no matter what you do will always have to live with it and accept it.