Re: introductions

[Guest guest]

Here it goes: I am 66, the mom of three kids, two who are cf carriers,

one (the youngest) you has cf, too--hope springs eternal--youngest is

now 38! Do not give up! Best medical care essential, exercise and a

good attitude helpful!

Love to all of you,

nRojas, with cystic fibrosis and cystic fibrosis related diabetes,

often known as CFRD, and gastro-esophogeal reflux problems, often

referred to as GERD!

[Guest guest]

I found out on 2/28/03 at 4:00pm that my one year old son had cf. I

will never forget that day/moment as long as I live.

I am new to this cf disease as well. This list has been a great

source of information and comfort.

How is your 3 year old doing? Where will you be having her cf

clinic visits?

Sara- mommy to Zach 17 months wcf

> i am a mother of three wonderful girls ages 10, 6, and 3. my three

year old has recently been diagnosed with c.f. (3/21/03) i have a

friend who had a daughter that died from c.f. about 4 years ago at

18. she had just graduated h.s. and the day she died she got an

acceptance letter to a college. i don't know much of what to expect

or anything so i am scared.

>

>

>

[Guest guest]

Welcome! Whats your name and your girls names? I'm glad you found us, this

is one of the best support lists especially for those with younger kids.

Mine's not so young but I try and help the younger families when I can, and

I have enjoyed getting to know everyone. Of course they didn't have cf

lists (or Internet) when mine were small!

love,

Mom of age 19 wcf and Nick age 21 nocf

introductions

> i am a mother of three wonderful girls ages 10, 6, and 3. my three year

old has recently been diagnosed with c.f. (3/21/03) i have a friend who had

a daughter that died from c.f. about 4 years ago at 18. she had just

graduated h.s. and the day she died she got an acceptance letter to a

college. i don't know much of what to expect or anything so i am scared.

[Guest guest]

my name is beth (john is my husband) my daughters names are amanda--10 w/o c.f.,

ashley--6 w/o c.f., and katelyn--3 w c.f. i find the fact that c.f. awareness

week is in oct. and ashley and katelyn's birthdays are in oct. very interesting.

Morey wrote:Welcome! Whats your name and your

girls names? I'm glad you found us, this

is one of the best support lists especially for those with younger kids.

Mine's not so young but I try and help the younger families when I can, and

I have enjoyed getting to know everyone. Of course they didn't have cf

lists (or Internet) when mine were small!

love,

Mom of age 19 wcf and Nick age 21 nocf

introductions

> i am a mother of three wonderful girls ages 10, 6, and 3. my three year

old has recently been diagnosed with c.f. (3/21/03) i have a friend who had

a daughter that died from c.f. about 4 years ago at 18. she had just

graduated h.s. and the day she died she got an acceptance letter to a

college. i don't know much of what to expect or anything so i am scared.

[Guest guest]

Welcome again Beth, I am happy to know you, and hope to get to know you

better. what happened that made you or your doctors suspect Katelyn has cf?

We (they, whoever) made Oct cf awareness month because thats when it is in

Austrailia.

love,

M

mom of age 19 wcf and Nick age 21 nocf

Re: introductions

> my name is beth (john is my husband) my daughters names are amanda--10 w/o

c.f., ashley--6 w/o c.f., and katelyn--3 w c.f. i find the fact that c.f.

awareness week is in oct. and ashley and katelyn's birthdays are in oct.

very interesting.

[Guest guest]

My 's birthday (Oct. 10) is the week before awareness week (Oct 12-18)

introductions

> i am a mother of three wonderful girls ages 10, 6, and 3. my three year

old has recently been diagnosed with c.f. (3/21/03) i have a friend who had

a daughter that died from c.f. about 4 years ago at 18. she had just

graduated h.s. and the day she died she got an acceptance letter to a

college. i don't know much of what to expect or anything so i am scared.

[Guest guest]

All the Grand Parents in our family said the same, but we know now that there

are some other carriers on my Dad's side. There was also a baby who died soon

after birth on my father in law's side. (who my father-in-law " doesn't remember "

even though it was the fraternal twin of his older sister-got the info from my

mom-in-law-his ex-wife) One of the mutations has is one that is often

found in those of his background so........... No one ever wants to be the one

who gave these mutations.

RE: introductions

> i kept your email so i could thank you. katelyn is doing well. the tapes

can help those in the family (and friends as well) understand this disease.

i need to show it to my mother-in-law yet; she is under the impression this

is something a person can get better from. anyway thanks so much for the

information--it's soooo helpful!!!! keep in touch. beth bennett

>

[Guest guest]

> We have similar frustrations with some of our relatives. When we

let the family know about Patti's diagnosis so that the cousins of my

husband and myself could be warned, with out fail every great

grandparent said " Well she didn't get it from my side! "

That's exactly what my son's birthgrandmother said. It ticked me off

to no end. I wasn't until I explained one of his mutation's was

primarily of ish descent when the light dawned. " Oh my ex-

husband was ish- it might have come from him " . Well duh. It is

rather like we are tainting them with bad genes if our child has

cystic fibrosis. It makes no difference to my son - he has cystic

fibrosis regardless. I thought the birthfamily might want to know so

the children could be tested. You would have thought I was offering

poison.

jan

[Guest guest]

I know--how many times has somebody asked me " What is it he has again? " cuz

they can't remember the words " cystic fibrosis " . And then when someone sees

that he has a g-tube, and they ask about it, I tell them he has CF. They

rarely know what it is, and then will say, " Can he eat regular food? " . Even

worse, there's ones that find out that he has CF (in my hometown where my

parents live), and will ask Mom, " So, will he be able to go to school like

normal kids? " Oh, my mom HATES that one. She asks what they mean, and they

say things like, " Well, will he still be able to learn? " Like it affects

the brain, too! Mom proceeds to point out that of course, this hasn't

affected him at all mind-wise. In fact, he's smarter than average, and can

read at a 6th grade level already, and do 3rd grade math! Could probably do

higher if I taught him, but I don't want to push him. I WISH people knew

more about this illness. I hate going into town when I go back home to

visit (you know, even when I'm 50, it will still be " back home " when I see

my parents! LOL), because there are only about 200 people total, and

everyone knows everybody else, and they all go, " Oh, is this the one that is

sick? " I want to say " NO, he's not sick! He's just fine! " But what do you

say? Any ideas?????

S., mom to Cody (7, pwcf), DJ (9, nocf), and a (14, nocf)

Re: introductions

>

> Just wait until someone says well aren't you worried that they might give

it

> to the ones that don't have CF!!! uneducated people drive me CRAZY!!!! Deb

A

>

>

>

[Guest guest]

, same thing happened here.

A long time ago, someone once told me " My cousin has that CF too but

he's in a wheelchair. " I asked if the cousin had cerebral palsy -- CP.

" Oh, yeah... that's it, I knew it had a C in it. " I said, " I have a

cousin with CP too, and he also uses a wheelchair. " Thankfully, that

was the end of the conversation.

You brought up an excellent point, though. How much of any disease or

chronic illness do we know about until it hits us personally, or

family or friends?

My oldest sister has celiac, her oldest son has Tourettes but I only

know the bare basics of either of those afflictions.

My youngest sister has rheumatoid arthritis... but still I only know

the bare basics of RA. I know more about seeing this once lively young

woman gradually deteriorating in pain, and how my heart would break

seeing her go through this until a new med became available about four

years ago. She gives herself a shot in the abdomen twice a week...

that's still pretty much all I know about RA other than she's now

doing 100% better.

My father emails me details of his glaucoma and cataract surgeries,

and happy results of rectal polyp and prostate exams... Geez, Dad!

Give me a break! I don't wanna go there!

Every time we meet someone who doesn't know about CF is just one more

opportunity we have to introduce them to our world. We never know when

someone we meet might years later put the information to use.

A few years ago, I met a young college student; I was holding a CF

awareness event on our university campus that first year we launched

the CF Awareness Week campaign. This petite, friendly young lady with

a tatoo and pierced eyebrow came by my office to introduce herself.

She said she had a two-year old daughter with CF.

It turns out she'd grown up in our town, a close-knit university town

of about 40,000 people. There are six elementary schools but only one

each middle school, jr. high and high school.

She said she was in 7th grade when a fellow classmate, Marcus, died of

CF. I knew Marcus. At the time, Marcus and my son were the only people

in our town with CF. The boys attended camp together until they closed

CF camps. was in 4th grade when Marcus died; we attended his

funeral, something I'll never forget because that day I was reminded

that my son is a truly rare person with a extraordinary soul.

I knew Marcus had been very popular, especially with the girls. The

young woman told me Marcus had been her friend, everyone's friend.

Shortly after graduating high school she found herself pregnant, gave

birth, and eventually the baby was diagnosed with CF. She said she

never would have known about CF if she hadn't known Marcus. The

diagnosis seemed to give her a sense of peace and connectivity to

Marcus. And a purpose; she embraced the opportunity to raise awareness

about CF.

So sure we get tired of saying, " No, he hasn't outgrown it; yes, he

still needs his enzyme... " But perhaps these are tests of *our*

patience and willingness to be awareness messengers?

Kim

--- " Baxter " <scottie@a...> wrote:

When Eilish was younger people used to ask me does it mean she wont

be able to walk. That used to puzzle me, but I think they were

muddled up with muscular dystrophy.