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CallaLily
Thank you, Saint Gerard!
Member since 10/07 4937 total posts
Name:
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Such shocking bad news!
So DH and I were over our friends' house last night for dinner. She was a BM in my wedding party and had a baby boy about a year ago. Well, after dinner we were all sitting on the couch having coffee and the baby was on the floor playing. We were talking and all of a sudden she says that they have to tell us something.. It turns out their baby has cystic fibrosis. They found out a few months after he was born. I was so shocked I didn't know what to say. She said she didn't say anything to us sooner because it was just too hard. She said that there have been great advances in treatment and that he's doing very well. Does anyone have any experience with this disease? I've never known anyone who's had it but I've only heard negative things. She seemed very optimistic but I'm extremely worried about this little guy. Please send some prayers for him if you can. 
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Posted 4/6/08 3:02 PM  |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: Such shocking bad news!
Every year there are better and better treatments available..although it's still something very scarey.
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| Posted 4/6/08 3:46 PM |
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jillee03
LIF Adult
Member since 8/05 953 total posts
Name:
Jill
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Re: Such shocking bad news!
a great site that is very helpful is boomer esiasion website. his son has CF and he does many fundraisers for them. I did a fundraiser for a friend of mine and he actually donated the "machine" that is very very expensive that the children need.
We did a fundraiser by ourselves and actually went to places like outback who is a big sponser of boomers, and told them our story and they donated GC. We got GC from the yankees, mets and many other places as well.
there are many advances but it is very costly. so a fundraiser is a great idea
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| Posted 4/6/08 4:59 PM |
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jax1023
LIF Adult
Member since 3/07 1165 total posts
Name:
Jackie
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Re: Such shocking bad news!
We get adult patients at my hospital with it. Many live into their 40's now, and by the time a new baby is that old, I'm sure there will be even great advances and a longer life span.
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| Posted 4/6/08 6:34 PM |
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Re: Such shocking bad news!
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| Posted 4/6/08 10:55 PM |
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LauderLady
LIF Toddler
Member since 6/05 380 total posts
Name:
Me
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Re: Such shocking bad news!
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| Posted 4/6/08 11:54 PM |
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Re: Such shocking bad news!
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| Posted 4/7/08 1:07 AM |
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watersdeb04
Back to school is here
Member since 12/07 1052 total posts
Name:
Deb
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Re: Such shocking bad news!
The poor family! Lots of prayers and well wishes for them.
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| Posted 4/7/08 8:47 AM |
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Chrisnamy
Summer is coming soon
Member since 1/07 3991 total posts
Name:
Amy
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Re: Such shocking bad news!
Posted by hbugal
Every year there are better and better treatments available..although it's still something very scarey.
Hopefully they will have a cure very soon!
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| Posted 4/7/08 10:53 AM |
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Re: Such shocking bad news!
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| Posted 4/7/08 4:43 PM |
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Briannasmommy
Love her so much <3
Member since 5/05 15567 total posts
Name:
Christina
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Re: Such shocking bad news!
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| Posted 4/7/08 8:25 PM |
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lulugrrl
My 3 Blessings
Member since 3/06 6551 total posts
Name:
L
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Re: Such shocking bad news!
Ugh, CF is so hard. I lost my cousin to it at 18. But this was quite a few years ago.
When my DS was born his bloodwork came back showing markers for CF. I looked up a lot of info. about it, and am amazed at the new advanced that have been made to help these CF children live longer. Into their 40's sometimes. My son tested negative for CF through follow up tests. I am thankful, but know how scary and hard it had to be for your friends to face this with their beautiful baby.
I'll will pray for them, and hope he has it mildly, and will also pray they will find a cure.
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| Posted 4/8/08 9:36 AM |
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2BEANS
wow time is going fast.
Member since 9/07 16106 total posts
Name:
Tina
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Re: Such shocking bad news!
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| Posted 4/8/08 1:42 PM |
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Nayia
<3 <3 <3
Member since 10/07 1824 total posts
Name:
Penny
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Re: Such shocking bad news!
I lost my cousin to CF. 18 years ago. he was only 6 yrs old when he passed but so much has changed since then. they still have not found a cure but there have been tons of advances in the treatments for it.
Hopefully one day all the advances will lead to a cure
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Just be stong for your friend and supportive. There will be good days and there will be bad days. I will kep the little guy in my prayers.
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| Posted 4/9/08 12:33 PM |
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jmf423
:)
Member since 5/05 6372 total posts
Name:
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Re: Such shocking bad news!
I know a lot about CF for a number of reasons. I lost my best friend to CF almost 2 years ago. Her sister had a double lung transplant  and is doing great. 
I also work with patients who have CF. If you have any questions FM me.
They are making a lot of advances and there is so much more available to a child born now with CF as opposed to 20-30 years ago.
Also, check out www.cff.org
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| Posted 4/9/08 1:27 PM |
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lvdolphins
My Loves!
Member since 5/05 46292 total posts
Name:
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Re: Such shocking bad news!
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| Posted 4/10/08 9:05 AM |
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Geraldine
Lovin Life........
Member since 5/07 2388 total posts
Name:
Geraldine
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Re: Such shocking bad news!
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| Posted 4/10/08 9:07 AM |
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Shelly
She's 7!!!
Member since 8/05 14624 total posts
Name:
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Re: Such shocking bad news!
i work with a guy with CF. He is in his 30's and just had his first child. They told him he would never live past 15.
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| Posted 4/11/08 2:59 PM |
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JavaJunkie
Someday, Somehow
Member since 6/05 5857 total posts
Name:
Lois
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Re: Such shocking bad news!
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| Posted 4/14/08 3:27 PM |
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Babytime
LIF Adolescent
Member since 6/05 659 total posts
Name:
Amy
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Re: Such shocking bad news!
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| Posted 4/14/08 5:14 PM |
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jw11897
LOVING LIFE
Member since 6/05 1433 total posts
Name:
Jess
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Re: Such shocking bad news!
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| Posted 4/14/08 10:13 PM |
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luvsbob4603
To a healthy 2013
Member since 5/05 21840 total posts
Name:
To a brand new year to a healthier me
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Re: Such shocking bad news!
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| Posted 4/15/08 6:46 PM |
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Dani922
Here's to new beginnings
Member since 10/07 7260 total posts
Name:
Danielle
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Re: Such shocking bad news!
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| Posted 4/17/08 4:51 PM |
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juanvi
Get Out!
Member since 10/06 4463 total posts
Name:
Christina
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Re: Such shocking bad news!
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| Posted 4/17/08 9:11 PM |
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Jackie24
~We Did it~
Member since 7/06 6718 total posts
Name:
Jackie
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Re: Such shocking bad news!
just to let you know my aunt has this and she is now in her 50's ......
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| Posted 4/18/08 8:19 PM |
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