Family of Child with Cystic Fibrosis Hopes Research Leads to Cure


“I was actually sitting there in the rocking chair holding him when they told me” “So you just kind of grabbed him and squeezed him a little tighter” “trying to deal with it and process what
was” “being told to you, what that meant. At first I really didn’t know” “exactly what cystic fibrosis was.” “Doing a research, talking to the doctors and everything, finding out” “exactly what it was, what it was, what it meant. So that was kind of the first process for me on how to handle it.” “Ten the big thing was just talking with people. Everybody wants to kind of” “say well, why us? And I remember one of my friends who has a son with some” “medical issues, he said his wife has a big issue with it.” “She was doing the ‘why us?’ And I just remember clear as day” “his response to her was ‘why not us?’ And that’s really helped” “as why not us? as far as me and Sarah. We’re great parents,” “we’ve got the family and the friends to help support us to get through it, so” “why not be with us instead of, you know,” “parents that don’t have the means to
provide” “proper care for somebody with CF.” “It doesn’t consume our life by any means.” “We haven’t let it.” “We don’t live around CF. It’s just a” “part of what we do, and we made some minor changes, but” “we didn’t change anything drastic to to
deal with it.” “He goes to school, we hang out with our friends, you know, he plays in the dirt.” “We have a house at Dale Hollow so he swims in the lake, you know, we do” “everything that he wants to do until
there’s a problem, you know, if there was a” “reason why we couldn’t, then we would
figure it out, but” “we’re not gonna let him. We have no
intent on doing that.” “The research is the” “big thing” “to help finding a cure, so anything that we can do and have Lucas help” “anybody else in the future… you feel
obligated to do it.” “Just hope one day we’ll see the benefits of all the research.” “Every time I get on a CF website,” “there’s something new coming out and I just hope that” “we can be part of that. I don’t know the
exact numbers but I just know” “When” “CF was first diagnosed that the life expectancy of somebody was” “you know, maybe early twenties, you know,” “twenties, teens and to now see people” “within their 40’s 50’s even sixties at” just gives you a lot more hope that no
research is on the right path after here

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