RE: cfparents-My letter to MAW any suggestions before I send it?

[Guest guest]

Becky,

Have you talked to anyone from MAW on the phone? Why would the doctors

office call you and tell you that and not the MAW foundation itself? I was

told upfront that it is up to the doctor to sign the consent for your child

to go. Maybe it is the doctors office you should be mad at. Have you asked

them in questions regarding the changes?

You don't want to send a letter and chew out someone who may not be the

source of the problem. I think I would get all the questions answered and

then send whatever letter you want to send. You don't want to burn bridges

if there is still a chance that your child can go and other arrangements can

be made.

Tina W. mother of , almost 18yoa wcf

cfparents-My letter to MAW any suggestions before I

send it?

Why bother to tell my 6 year old she was going to Disney Last Wednesday and

2

days ago the doctors office calls and tells us her trip is denied What are

you people Mess Up A Wish.If I had ever had any Idea that you people would

break

my childs heart I would NEVER have asked that her wish be filled.My 6 year

old has cystic fibrosis she was exposed to burkholder cepacia in the

hospital in

2000 6 weeks later she was back in the hospital turning blue and gray around

her lips and struggling to breath her nails were blue she was put on oxygen

and more antibotics she was then sent home.By isolating our family we have

managed to keep her out of the hospital for 3 years.In her first three years

she

was in the hospital 14 times any where from 7 days to 28 days.her last

hospitalization and any more in the future she will be in isolation as that

is how the

CFF guidelines say to deal with b.cepacia as it rapidly destroys lung tissue

it is a killer bacteria.Why would any of you expect me as a parent to put my

child at risk by putting her on a plane.Maybe if it was your child you would

know the risks but she is my child and and I do know the risks her LIFE is

more

important than a wish trip to fantasy land WE have to live in REALITY and it

is people like you who play GOD that really make my job as a parent sooooo

much

harder.I had to hold my 6 year old as she cried her heart out because your

decision broke her heart.Life is full of heartache and pain but did you have

to

add to it? Don't we have enough to deal with? Becky

[Guest guest]

I agree with Tina. Talk to someone at MAW and tell them what the dr

said and how concerned you are about it. They may have no idea the

dr said that and he may be in error too. I think if you explained

the situation to MAW, they would be very accommodating.

> Becky,

> Have you talked to anyone from MAW on the phone? Why would the

doctors

> office call you and tell you that and not the MAW foundation

itself? I was

> told upfront that it is up to the doctor to sign the consent for

your child

> to go. Maybe it is the doctors office you should be mad at. Have

you asked

> them in questions regarding the changes?

>

> You don't want to send a letter and chew out someone who may not be

the

> source of the problem. I think I would get all the questions

answered and

> then send whatever letter you want to send. You don't want to burn

bridges

> if there is still a chance that your child can go and other

arrangements can

> be made.

>

> Tina W. mother of , almost 18yoa wcf

>

> cfparents-My letter to MAW any suggestions

before I

> send it?

>

>

> Why bother to tell my 6 year old she was going to Disney Last

Wednesday and

> 2

> days ago the doctors office calls and tells us her trip is denied

What are

> you people Mess Up A Wish.If I had ever had any Idea that you

people would

> break

> my childs heart I would NEVER have asked that her wish be filled.My

6 year

> old has cystic fibrosis she was exposed to burkholder cepacia in the

> hospital in

> 2000 6 weeks later she was back in the hospital turning blue and

gray around

>

> her lips and struggling to breath her nails were blue she was put

on oxygen

> and more antibotics she was then sent home.By isolating our family

we have

> managed to keep her out of the hospital for 3 years.In her first

three years

> she

> was in the hospital 14 times any where from 7 days to 28 days.her

last

> hospitalization and any more in the future she will be in isolation

as that

> is how the

> CFF guidelines say to deal with b.cepacia as it rapidly destroys

lung tissue

>

> it is a killer bacteria.Why would any of you expect me as a parent

to put my

>

> child at risk by putting her on a plane.Maybe if it was your child

you would

>

> know the risks but she is my child and and I do know the risks her

LIFE is

> more

> important than a wish trip to fantasy land WE have to live in

REALITY and it

>

> is people like you who play GOD that really make my job as a parent

sooooo

> much

> harder.I had to hold my 6 year old as she cried her heart out

because your

> decision broke her heart.Life is full of heartache and pain but did

you have

> to

> add to it? Don't we have enough to deal with? Becky

>

>

>