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Post by melody on May 15, 2010 21:44:53 GMT -5
Hi all, is there anyone who has a child with cystic fibrosis? I need info about it. I have a dear friend whose grandbaby was diagnosed with it Friday. Little Everette is less than a month old. I just want to know how to support Grandma and be there for her.
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Post by Alaska on Jun 23, 2010 10:22:09 GMT -5
I hate to ignore a post, but I don't have a whole lot of information, especially on the experience of living with CF. I do know that when there was a concern about my sons having it, I did a lot of looking around online and found a support group kind of like this for CF.
I am so sorry for your friend. I know it's not a good thing at all.
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Post by msmarib on Jun 23, 2010 21:39:44 GMT -5
I have not but I was friends w/two twin girls in college who had it. Both had lung transplants. Several times daily they would beat on one another's backs to reduce and dislodge the secretions that built up in their longs. If not, they would choke and die. Sorry to be so blunt. There is good news. They are among (or are) the oldest living CF survivors. They went to college and lead productive lives. The fear that their friendship circle experienced was their death. Supporting them meant visiting and not treating them like sick people, but realizing they wanted to live full lives. At one month old, I imagine her fear is of her child's mortality. It may be helpful to get informatioin from March of Dimes and other organizations such as the American Lung Association. The very best to your friend and to you for being such a supportive friend.
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Post by MamaDances on Jun 23, 2010 23:31:42 GMT -5
I grew up with a best friend whose sister's had CF. There are some great resources around, although I wish I still had them bookmarked. The Cystic Fibrosis Foundation has a website also. Growing up, for the first 10 years or so, both led fairly normal lives. They took their enzymes and did their treatments, but we played on soccer teams together, went to school together, and did all normal childhood activities. The more frequent hospitalizations and long-term stays were tough but I used to visit them and they grew up with a GREAT circle of very close, loving, and supportive friends. I wish no one had to face a diagnosis like this, but with medical advancements CF patients have longer and longer average life expectancies... and with transplants can far surpass what was once expected of them, with actual quality of life.
I'm so very sorry for your friend and her family - and I'm especially touched to see my angel baby's name in conjunction with CF.
I hope more information has been thrown your way and that little Everette has a strong outlook. The most defining thing I remember about Krysten was her unfailing strength, acceptance, and love. No one around us saw her as a disease, she still is one of the most amazing people I've known.
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Post by 1angel3miracles on Jun 28, 2010 23:17:27 GMT -5
I read a wonderful book when I was a kid called "Robyn's book: a true diary" it's about a girl with CF. It's aimed at pre-teens but I seem to remember it being really informative. The author passed away from CF shortly after it was published. Now, it was published in the '80s but I *think* there is a more updated version
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Post by rachelandtyke on Jul 3, 2010 21:37:38 GMT -5
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