Re: What age should child w/cf find out about life expectancy? please answer

[Guest guest]

I have exactly the same problem.

I appreciate the " angle " , which is a way to get people to take notice

and care about CF, but I am not crazy about mentioning the life

expectancy, which, after all is just a stupid number.

Look at Hal in his 70's and so many others.

I try to stress the fact that in the " olden days " children with CF

usually had very little chance to see their teens. Now, thanks to the

medical improvements, etc. children with CF can expect to see

adulthood. I say things like help cure this disease to give children

a chance for a long, healthy life.

I think there are better ways to get the point across without saying

they are expected to live to whatever age.

In fact, I just recently looked at the flyer for Cystic Fibrosis

Awareness Week, and it says " fatal " which I am not fond of, either. I

wish I had caught it sooner.

I think, in order to be sincere, we must do the fundraising speech

with the same words and attitude as we talk to our children. I cannot

put on one face for the money (desperately needing money to save our

babies) and a cheery, positive, hopeful side for our kids.

I would ask if she might re-word for next time and, if it comes up

with your kids or their friends, explain the way these stupid numbers

are attained. When my older son (no cf) asked about this, I explained

that just 20 years ago, the life expectancy was about 5, and we

expect it to only continue to grow in leaps and bounds from here.

-Lenora

>I have a dilema. A flyer was handed out to every child in every

>school in my town regarding a CF walk in May. A woman in town has a 4

>year old with it. She made the flyer.

>

>My Eddie is 8 w/cf and Greg is 6 w/cf. They know a lot about CF, but

>they don't know the average age of life.

>

>The flyer contained a sentence. " Their life expectancy is only 32

>years old " .

>

>Please give me advise. Do I have this sentence removed? (It will be

>sent home weekly until May 18th, and is probably hanging up in the

>schools).

>

>How old should my boys be before I tell them this? I'm so afraid

>Eddie is going to read it.

>

>My personal opinion, and I am very honest about CF with my boys, is

>that I think he is too young to know this. I was thinking more like

>12 years old?

>

> mom of 2 w/cf

>

>

[Guest guest]

Dear ,

I gave a lot of thought to your dilema. Life is terminal no matter

what your condition is. So, I do not think a child or young adult

should know how long he or she may live, it is irrelevant. We do

not know our time in this planet, you may walk outside the door get

hit by a car and die. On the other hand look at all the people in

this list that have beat the odds, they are our inspiration and what

our kids need to go by.

Hope this helps,

> I have a dilema. A flyer was handed out to every child in every

> school in my town regarding a CF walk in May. A woman in town has

a 4

> year old with it. She made the flyer.

>

> My Eddie is 8 w/cf and Greg is 6 w/cf. They know a lot about CF,

but

> they don't know the average age of life.

>

> The flyer contained a sentence. " Their life expectancy is only 32

> years old " .

>

> Please give me advise. Do I have this sentence removed? (It will

be

> sent home weekly until May 18th, and is probably hanging up in the

> schools).

>

> How old should my boys be before I tell them this? I'm so afraid

> Eddie is going to read it.

>

> My personal opinion, and I am very honest about CF with my boys,

is

> that I think he is too young to know this. I was thinking more

like

> 12 years old?

>

> mom of 2 w/cf