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

[Guest guest]

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