i know a kid that has cf, her name is emery she is two years old , like some of the nominees she had a large part of her intestine removed at day 1 and spent the first 7mos of her life in upenn childrens hospital in philedelphia. she had a cholostemy bag for a few months until they could re-attach her.
she is my grandaughter.
she has been home for a year now. my son in law and daughter lived in that hospital room with her during that time and my wife and i took turns staying there two days each for that time to help out.
emery is a fighter. she is now extremely active, very smart and has an infectious personality. nothing seems to bother her. did i mention she lies alot when she does something wrong???
the degree of work and dedication that is required to keep her healthy is demanding as there is a very strict protocol to follow.
we have emery 1 day a week for babysitting, and we look forward to it as she is such a joy. she loves dolls,trucks,books and kicking and throwing balls in the yard etc. you would never know there was an issue. she still has a stomach tube for night feeding to get her weight up, because despite her voracious appetite cf kids do not absorb all the calories they need, eventually that will be removed.
i wish you could see her in action.
i say all this, to give you a thunbnail picture of cf. anything that you can do would be appreciated ,including prayers for cf kids.
sorry this so long. thanks for your patience for reading this