RE: cfparents-make a wish is full of BS

[Guest guest]

WE ARE ON THE LIST HERE IN IOWA AND ARE WAITING TO GO SEE CELINE IN LAS

VEGAS. WHEN WE TALKED TO THEM OUR CONCERN WAS THAT MY HUSBAND ABSOLUTELY

DOES NOT LIKE TO FLY, AND THEY SAID THAT WASN'T A PROBLEM THAT THEY COULD

RENT A CAR OR VAN OR WHATEVER TO GET THERE. HAVE YOU TALKED TO THE MAKE A

WISH PEOPLE YOURSELF? I THINK, I WOULD BE MAKING A BIG STINK! HOW IN THE

WORLD CAN YOU TELL A CHILD ONE THING AND TURN AROUND AND SAY SOMETHING ELSE?

I HOPE THIS GETS ALL STRAIGHTENED OUT.

TINA W., MOTHER OF STEPHANIE, ALMOST 18YOA WCF

cfparents-make a wish is full of BS

Hi All.We have been dealing with Make a Wish for over 9 months (we had mono

and chicken pox so it took us a while to get better) they came out last

wednesday and told Rebekah that she would be going to disney and they were

finalizing

the trip.Rebekah's doctor called yesterday and told us that Make a Wish had

turned her down because (get this)we asked to go in a van to drive (her idea

was a travel trailer (mobile home) they will be happy to send us on a plane

which would mean NO CAR in an Emergency DUH are they STUPID or what? As if I

want

to be more than 1500 miles from her doctor with NO CAR? My concern over the

plane has to do with cepacia and how to protect my child from other people

and

protect other people from her germs (I can see it now I stand at the door of

the plane asking do you have CF or Cancer or an Immunity problem from all

the

passengers getting on) also I can just see my 4,6,8,10 year olds sitting for

any

trip anywhere it is hard enough in a van where I can stop and get them out

to

run off energy that is impossible on a plane.Would any of you want to be

masked (you know the hot sweaty kind that make breathing hard )for a trip

from

newyork to florida I don't want to put my kid thru that.I am spitting MAD

right

now those people had NO business Lying to my 6 year old by telling her she

would be having a trip(do you know how hard it was to tell her she can't go?

It broke my heart she was getting all excited and looking on the computer

telling me where she wanted to go and what she wanted to do and what

characters she

wanted to see.I don't mean to sound like a whiner but we can just barely

keep

our cars on the road this year with bankruptcy and foreclosure on the house

,lawyer bills we couldn't get ourselves to disney if we tried . On top of

what

they told us yesterday my 8 year old had an eye appt. she is going to have

surgery to straighten her left eye later this year. My garage just told me

my

van I bought one year ago used has a bad engine it needs replacing IF it

isn't

one thing it is twenty million others.OK I think I feel a little better but

I

am still pissed off at Make a Wish(maybe there new name should be Mess Up A

Wish) .BeckyB.Mama to 8 kids -one who is very upset-2w/cf---Nana to 2

[Guest guest]

Umm... We were approved for a Make a Wish trip to Disneyworld and they were

going to fly us and provide us with a rental car. Are you sure they

wouldn't do the same for you?

Becky mom of Ricky 7 with CF and Andy 5 no CF

cfparents-make a wish is full of BS

Hi All.We have been dealing with Make a Wish for over 9 months (we had mono

and chicken pox so it took us a while to get better) they came out last

wednesday and told Rebekah that she would be going to disney and they were

finalizing

the trip.Rebekah's doctor called yesterday and told us that Make a Wish had

turned her down because (get this)we asked to go in a van to drive (her idea

was a travel trailer (mobile home) they will be happy to send us on a plane

which would mean NO CAR in an Emergency DUH are they STUPID or what? As if I

want

to be more than 1500 miles from her doctor with NO CAR? My concern over the

plane has to do with cepacia and how to protect my child from other people

and

protect other people from her germs (I can see it now I stand at the door of

the plane asking do you have CF or Cancer or an Immunity problem from all

the

passengers getting on) also I can just see my 4,6,8,10 year olds sitting for

any

trip anywhere it is hard enough in a van where I can stop and get them out

to

run off energy that is impossible on a plane.Would any of you want to be

masked (you know the hot sweaty kind that make breathing hard )for a trip

from

newyork to florida I don't want to put my kid thru that.I am spitting MAD

right

now those people had NO business Lying to my 6 year old by telling her she

would be having a trip(do you know how hard it was to tell her she can't go?

It broke my heart she was getting all excited and looking on the computer

telling me where she wanted to go and what she wanted to do and what

characters she

wanted to see.I don't mean to sound like a whiner but we can just barely

keep

our cars on the road this year with bankruptcy and foreclosure on the house

,lawyer bills we couldn't get ourselves to disney if we tried . On top of

what

they told us yesterday my 8 year old had an eye appt. she is going to have

surgery to straighten her left eye later this year. My garage just told me

my

van I bought one year ago used has a bad engine it needs replacing IF it

isn't

one thing it is twenty million others.OK I think I feel a little better but

I

am still pissed off at Make a Wish(maybe there new name should be Mess Up A

Wish) .BeckyB.Mama to 8 kids -one who is very upset-2w/cf---Nana to 2

[Guest guest]

We leave on our Make A Wish trip tomorrow morning. We are flying which

we all love to do anyway. I know here there is a M.A.W. Volunteer at

the other end , which is a 4 hour plane trip, who will take us anywhere

we need to go. Wont they have a volunteer there for you. It sounds

like a big muddle up. For us they couldn't do enough. I am sure they

would have hired vehicles before as some people hate to fly. I would

ring up the head of your state M.A.W. and see what is happening.

(Australia)

cfparents-make a wish is full of BS

Hi All.We have been dealing with Make a Wish for over 9 months (we had

mono

and chicken pox so it took us a while to get better) they came out last

wednesday and told Rebekah that she would be going to disney and they

were finalizing

the trip.Rebekah's doctor called yesterday and told us that Make a Wish

had

turned her down because (get this)we asked to go in a van to drive (her

idea

was a travel trailer (mobile home) they will be happy to send us on a

plane

which would mean NO CAR in an Emergency DUH are they STUPID or what? As

if I want

to be more than 1500 miles from her doctor with NO CAR? My concern over

the

plane has to do with cepacia and how to protect my child from other

people and

protect other people from her germs (I can see it now I stand at the

door of

the plane asking do you have CF or Cancer or an Immunity problem from

all the

passengers getting on) also I can just see my 4,6,8,10 year olds sitting

for any

trip anywhere it is hard enough in a van where I can stop and get them

out to

run off energy that is impossible on a plane.Would any of you want to be

masked (you know the hot sweaty kind that make breathing hard )for a

trip from

newyork to florida I don't want to put my kid thru that.I am spitting

MAD right

now those people had NO business Lying to my 6 year old by telling her

she

would be having a trip(do you know how hard it was to tell her she can't

go?

It broke my heart she was getting all excited and looking on the

computer

telling me where she wanted to go and what she wanted to do and what

characters she

wanted to see.I don't mean to sound like a whiner but we can just barely

keep

our cars on the road this year with bankruptcy and foreclosure on the

house

,lawyer bills we couldn't get ourselves to disney if we tried . On top

of what

they told us yesterday my 8 year old had an eye appt. she is going to

have

surgery to straighten her left eye later this year. My garage just told

me my

van I bought one year ago used has a bad engine it needs replacing IF it

isn't

one thing it is twenty million others.OK I think I feel a little better

but I

am still pissed off at Make a Wish(maybe there new name should be Mess

Up A

Wish) .BeckyB.Mama to 8 kids -one who is very upset-2w/cf---Nana to 2

[Guest guest]

Have a wonderful time & bring us back lots of pictures of the glorious

memories you all will have made

LOVE & HUGS,

GrandmomBEV

cfparents-make a wish is full of BS

Hi All.We have been dealing with Make a Wish for over 9 months (we had

mono

and chicken pox so it took us a while to get better) they came out last

wednesday and told Rebekah that she would be going to disney and they

were finalizing

the trip.Rebekah's doctor called yesterday and told us that Make a Wish

had

turned her down because (get this)we asked to go in a van to drive (her

idea

was a travel trailer (mobile home) they will be happy to send us on a

plane

which would mean NO CAR in an Emergency DUH are they STUPID or what? As

if I want

to be more than 1500 miles from her doctor with NO CAR? My concern over

the

plane has to do with cepacia and how to protect my child from other

people and

protect other people from her germs (I can see it now I stand at the

door of

the plane asking do you have CF or Cancer or an Immunity problem from

all the

passengers getting on) also I can just see my 4,6,8,10 year olds sitting

for any

trip anywhere it is hard enough in a van where I can stop and get them

out to

run off energy that is impossible on a plane.Would any of you want to be

masked (you know the hot sweaty kind that make breathing hard )for a

trip from

newyork to florida I don't want to put my kid thru that.I am spitting

MAD right

now those people had NO business Lying to my 6 year old by telling her

she

would be having a trip(do you know how hard it was to tell her she can't

go?

It broke my heart she was getting all excited and looking on the

computer

telling me where she wanted to go and what she wanted to do and what

characters she

wanted to see.I don't mean to sound like a whiner but we can just barely

keep

our cars on the road this year with bankruptcy and foreclosure on the

house

,lawyer bills we couldn't get ourselves to disney if we tried . On top

of what

they told us yesterday my 8 year old had an eye appt. she is going to

have

surgery to straighten her left eye later this year. My garage just told

me my

van I bought one year ago used has a bad engine it needs replacing IF it

isn't

one thing it is twenty million others.OK I think I feel a little better

but I

am still pissed off at Make a Wish(maybe there new name should be Mess

Up A

Wish) .BeckyB.Mama to 8 kids -one who is very upset-2w/cf---Nana to 2

[Guest guest]

We are not going to put Rebekah on a plane.That has been our policy for over

2 years.She has b.cepacia and would have to wear a mask the whole flight from

NY to Florida and if any one on the flight had any health problems they could

cross contaminate each other.MAW reps came out last wed. and told us they had

to make the reservations and we were to leave the first week in Nov.to go by

van they were going to rent for us to travel there in.We live about 1600 miles

from Disney and our vehicles are on their last legs so we are stuck.BeckyB.

[Guest guest]

Becky B -

It sounds like you are dealing with too much! The " Wish " situation is

unacceptable. As a parent of a 12 year old with CF, I know the perils and

stresses of travel. You need to do what is comfortable for you. The

additional stress of the trip in and of itself can be overwhelming. Any

comfort level you need to make it easy on you, should be coordinated. In

regards to the financial issues, we operate a foundation that assists

families with many CF issues like education and financial assistance. It is

a Foundation formed and operated by a CF family and might be something you

want to use as a resource. Applications for assistance are avialable on

line @ www.r4stars.org

Good luck and god bless.

- father of daughter 12 w/cf and son 5 no cf.

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treatment. Always seek the advice of your physician or other qualified

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condition. Never disregard professional medical advice or delay in seeking

it because of something you have read in this email! If you think you may

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the Stars Foundation to Benefit Children with Cystic Fibrosis, Inc. ( " Reach

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is solely at your own risk.

cfparents-make a wish is full of BS

> Hi All.We have been dealing with Make a Wish for over 9 months (we had

mono

> and chicken pox so it took us a while to get better) they came out last

> wednesday and told Rebekah that she would be going to disney and they were

finalizing

> the trip.Rebekah's doctor called yesterday and told us that Make a Wish

had

> turned her down because (get this)we asked to go in a van to drive (her

idea

> was a travel trailer (mobile home) they will be happy to send us on a

plane

> which would mean NO CAR in an Emergency DUH are they STUPID or what? As if

I want

> to be more than 1500 miles from her doctor with NO CAR? My concern over

the

> plane has to do with cepacia and how to protect my child from other people

and

> protect other people from her germs (I can see it now I stand at the door

of

> the plane asking do you have CF or Cancer or an Immunity problem from all

the

> passengers getting on) also I can just see my 4,6,8,10 year olds sitting

for any

> trip anywhere it is hard enough in a van where I can stop and get them out

to

> run off energy that is impossible on a plane.Would any of you want to be

> masked (you know the hot sweaty kind that make breathing hard )for a trip

from

> newyork to florida I don't want to put my kid thru that.I am spitting MAD

right

> now those people had NO business Lying to my 6 year old by telling her she

> would be having a trip(do you know how hard it was to tell her she can't

go?

> It broke my heart she was getting all excited and looking on the computer

> telling me where she wanted to go and what she wanted to do and what

characters she

> wanted to see.I don't mean to sound like a whiner but we can just barely

keep

> our cars on the road this year with bankruptcy and foreclosure on the

house

> ,lawyer bills we couldn't get ourselves to disney if we tried . On top of

what

> they told us yesterday my 8 year old had an eye appt. she is going to have

> surgery to straighten her left eye later this year. My garage just told me

my

> van I bought one year ago used has a bad engine it needs replacing IF it

isn't

> one thing it is twenty million others.OK I think I feel a little better

but I

> am still pissed off at Make a Wish(maybe there new name should be Mess Up

A

> Wish) .BeckyB.Mama to 8 kids -one who is very upset-2w/cf---Nana to 2

>

>

>

[Guest guest]

when we talked to the maw people, they said it was our call whether we drove

or flew.

Re: cfparents-make a wish is full of BS

We are not going to put Rebekah on a plane.That has been our policy for over

2 years.She has b.cepacia and would have to wear a mask the whole flight

from

NY to Florida and if any one on the flight had any health problems they

could

cross contaminate each other.MAW reps came out last wed. and told us they

had

to make the reservations and we were to leave the first week in Nov.to go by

van they were going to rent for us to travel there in.We live about 1600

miles

from Disney and our vehicles are on their last legs so we are stuck.BeckyB.

[Guest guest]

HI, my daughter went on a trip with the make a wish foundation. They sent

the whole family( my husband, myself and my 6,5,and 4 year old. We flew

thereand it turned out ok. The kids loved it, it was sooo much quicker and the

treated the whole family like royalty because we wore the Make A Wish buttons.

Also when we got to the airport there was a rent a car waiting there for us. We

were free to take it anywhere. Ask them about getting a rent a car when you

get off the plane. The hospital is close and they assured us that if we needed

to get back in an emergency we could.

I hope this helps a little.

Sandy

Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo

w/CF - Kaylee

[Guest guest]

That is the same as what we did, long time ago though, I;m sure they would give

you a rental van big enough for your family.

love,

M RE: cfparents-make a wish is full of BS

Umm... We were approved for a Make a Wish trip to Disneyworld and they were

going to fly us and provide us with a rental car. Are you sure they

wouldn't do the same for you?

Becky mom of Ricky 7 with CF and Andy 5 no CF