My daughter was diagnosed when she was 4 months. I
remember all too well how overwhelming we felt when
first trying to gain advantage over the disease. The
first two years for my daughters life was fraught with
trials. I meet with new family members of the CF
community here in our market and help answer
questions. The best advice I give others is to listen
to the doctors. Every member of the CF community has
similarities and differences. Each struggle with CF
in different ways, each succeeds in different areas.
You sister’s doctors will know what is best for
gaining control over lung function and weight gain.

Don’t read about the negative stories of children with
CF for at least 2 years after diagnosis. Most stories
you will hear are complications due after years of the
disease not issues you will have in the next few
years. These stories only will cause unnecessary
causes of worry. Most children centers have CF
Parents that act as a support group to those who just
find out about CF. Use this resource and talk to the
local members of the community. Reach out and share
ideas with one another. Our local support group has
been of a great help to my wife.

Don’t listen to friends who know someone with CF…their
advice is well meaning, but misinformed. What works
for my daughter may not work for your nephew and my
friends and neighbors don’t know enough about her
condition to ever share advice to your sister. Listen
closely to the doctors.

I don’t necessarily believe this disease was chosen by
deity for my daughter but I do believe she can become
stronger because of this challenge in life. Have
faith in the advice his doctors give him, and have
faith in your nephew. He will be stronger than you
think.

--- cysticfibrosissupport@yahoogroups.com wrote:
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> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. RE: (unknown)
> From: "Jeff Diedrich"
> <calvary4u@...>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Fri, 1 Apr 2005 10:05:37 -0500
> From: "Jeff Diedrich" <calvary4u@...>
> Subject: RE: (unknown)
>
> Hello.
> I appreciate your heart in wanting to help your
> sister. That is great.
> We have a two year old son with CF.
> My wife and I are Christians and the Bible was a
> great comfort to me. I was led to read Psalm 139-
> that passage clearly says that God knows us all in
> great detail while we are in the womb. It also says
> that He stitches each child together with great
> care. It was no mistake that He took a recessive
> gene from me and my wife and stitched them together
> to give my son CF. I do not know why but I trust
> God's loving and providential hand.
>
> This may be a help to your sister, to know that she
> and her husband are not being punished by God nor is
> it just a matter of statistics and she drew the
> unlucky straw. It is providence and He makes no
> mistakes.
>
> Also, I would read books or articles on the subject
> to become more familiar with the causes, symptoms
> and treatment of CF. I know my wife and I just need
> help around the house, but we have no family to help
> us. Caring for a CF child takes a lot of work but if
> you have other children it is even more work. Your
> offer to help her with whatever she needs would be
> invaluable.
>
> I hope this helps some.
>
> Jeff
>
>
> ----- Original Message -----
> From: happyday4me2000
> To: cysticfibrosissupport@yahoogroups.com
> Sent: 3/31/2005 2:25:50 PM
> Subject: [Cystic Fibrosis Support] (unknown)
>
>
>
> Ok, is this how this is done. If it is, I am wanting
> to know what I
> can do to help my sister. Her 8mo. old son has been
> diagnosed w/ CF
> and I am fairly ignorant on the subject. I have
> always been
> the "fixer" in the family and now I'm not even sure
> how to help. She
> is young and I think maybe a little overwhelmed by
> the situation and
> with all the free advice advice coming from 1001
> friends and
> relatives. I just want to do and say the right thing
> so that she will
> be open to my help over the long term. Does this
> make sense. I hope
> I'm not wasting anyones time. I just care.
>
>
>
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