make a wish

[Guest guest]

I live about 30 minutes from the Florida welcome station you let me know what

you are interested in and I will send you brochures. I can send them before

you request Ricky decides. I enjoy the drive so it won't be any trouble you

just let me know what you guys are interested in and I will send a bunch

Tina Mom to Christian 11 yowcf and 19 yowocf

[Guest guest]

I live about 30 minutes from the Florida welcome station you let me know what

you are interested in and I will send you brochures. I can send them before

you request Ricky decides. I enjoy the drive so it won't be any trouble you

just let me know what you guys are interested in and I will send a bunch

Tina Mom to Christian 11 yowcf and 19 yowocf

[Guest guest]

I had a question about this. I remember someone on C-L saying that in order

for them to have a Make-A-Wish, the kid's PFTs have to be below x amount or

the doctor has to certify that they are very ill or something? What are the

guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral pneumonia)

and I don't want to wait until his health/hospitalizations are so

unpredictable that we can't plan ahead for a trip. Ricky has unequivocably

stated that he wants to go to Disneyworld (we live in CA and have already

been to Disneyland twice) so that will probably be what we'll do. Maybe the

surrounding parks (the other Disney parks, Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

I had a question about this. I remember someone on C-L saying that in order

for them to have a Make-A-Wish, the kid's PFTs have to be below x amount or

the doctor has to certify that they are very ill or something? What are the

guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral pneumonia)

and I don't want to wait until his health/hospitalizations are so

unpredictable that we can't plan ahead for a trip. Ricky has unequivocably

stated that he wants to go to Disneyworld (we live in CA and have already

been to Disneyland twice) so that will probably be what we'll do. Maybe the

surrounding parks (the other Disney parks, Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

I had a question about this. I remember someone on C-L saying that in order

for them to have a Make-A-Wish, the kid's PFTs have to be below x amount or

the doctor has to certify that they are very ill or something? What are the

guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral pneumonia)

and I don't want to wait until his health/hospitalizations are so

unpredictable that we can't plan ahead for a trip. Ricky has unequivocably

stated that he wants to go to Disneyworld (we live in CA and have already

been to Disneyland twice) so that will probably be what we'll do. Maybe the

surrounding parks (the other Disney parks, Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

Rebekah,

I remember the post that you are refering to. It is such a sad story.That family

was from Canada. It seem's that they follow a different set of guidelines, or

that doctor was just an a##. What I would suggest is to speak to your sons Dr.

or the social worker you see when he goes to clinic. I'm not sure how it's done

at other clinic's but when we go there is a long line of people waiting to see

Josh. We see Dr's, dietician, social worker etc. I believe that it just takes an

recomendation from your doctor. Josh's pft's are usually pretty good so I don't

think that that is a deciding factor. I just got off the phone with the social

worker today. We are taking a family of 9. I kind of expected them to have a

problem with that, but none at all. Good luck, and keep us informed.

RE: Re: make a wish

I had a question about this. I remember someone on C-L saying that in order

for them to have a Make-A-Wish, the kid's PFTs have to be below x amount or

the doctor has to certify that they are very ill or something? What are the

guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral pneumonia)

and I don't want to wait until his health/hospitalizations are so

unpredictable that we can't plan ahead for a trip. Ricky has unequivocably

stated that he wants to go to Disneyworld (we live in CA and have already

been to Disneyland twice) so that will probably be what we'll do. Maybe the

surrounding parks (the other Disney parks, Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

Rebekah,

I remember the post that you are refering to. It is such a sad story.That family

was from Canada. It seem's that they follow a different set of guidelines, or

that doctor was just an a##. What I would suggest is to speak to your sons Dr.

or the social worker you see when he goes to clinic. I'm not sure how it's done

at other clinic's but when we go there is a long line of people waiting to see

Josh. We see Dr's, dietician, social worker etc. I believe that it just takes an

recomendation from your doctor. Josh's pft's are usually pretty good so I don't

think that that is a deciding factor. I just got off the phone with the social

worker today. We are taking a family of 9. I kind of expected them to have a

problem with that, but none at all. Good luck, and keep us informed.

RE: Re: make a wish

I had a question about this. I remember someone on C-L saying that in order

for them to have a Make-A-Wish, the kid's PFTs have to be below x amount or

the doctor has to certify that they are very ill or something? What are the

guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral pneumonia)

and I don't want to wait until his health/hospitalizations are so

unpredictable that we can't plan ahead for a trip. Ricky has unequivocably

stated that he wants to go to Disneyworld (we live in CA and have already

been to Disneyland twice) so that will probably be what we'll do. Maybe the

surrounding parks (the other Disney parks, Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

Rebekah,

I remember the post that you are refering to. It is such a sad story.That family

was from Canada. It seem's that they follow a different set of guidelines, or

that doctor was just an a##. What I would suggest is to speak to your sons Dr.

or the social worker you see when he goes to clinic. I'm not sure how it's done

at other clinic's but when we go there is a long line of people waiting to see

Josh. We see Dr's, dietician, social worker etc. I believe that it just takes an

recomendation from your doctor. Josh's pft's are usually pretty good so I don't

think that that is a deciding factor. I just got off the phone with the social

worker today. We are taking a family of 9. I kind of expected them to have a

problem with that, but none at all. Good luck, and keep us informed.

RE: Re: make a wish

I had a question about this. I remember someone on C-L saying that in order

for them to have a Make-A-Wish, the kid's PFTs have to be below x amount or

the doctor has to certify that they are very ill or something? What are the

guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral pneumonia)

and I don't want to wait until his health/hospitalizations are so

unpredictable that we can't plan ahead for a trip. Ricky has unequivocably

stated that he wants to go to Disneyworld (we live in CA and have already

been to Disneyland twice) so that will probably be what we'll do. Maybe the

surrounding parks (the other Disney parks, Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

Call your local Children wish or any similar group. There are many .They

all hook up with GIVE KIDS THE WORLD. this is where you want to ask for.

WDW in Orlando & Give Kid the world.& other attractions in Orlando.

They will send forms to docs so give the doc who will say he should go &

that he has a catastrophic illness. One who isn't shy to say he needs

this trip. BUT he is well enough to go NOW.......They MIGHT want to come

visit you......and will also want to ask HIM.........

It will be great . If he has ever been granted a wish before THEY WILL

NOT DO AGAIN. All compassion programs are linked together in computers.

Best wishes. It is a great trip for all the immediate family :

LOVE & HUGS, grandmomBEV

RE: Re: make a wish

I had a question about this. I remember someone on C-L saying that in

order for them to have a Make-A-Wish, the kid's PFTs have to be below x

amount or the doctor has to certify that they are very ill or something?

What are the guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral

pneumonia) and I don't want to wait until his health/hospitalizations

are so unpredictable that we can't plan ahead for a trip. Ricky has

unequivocably stated that he wants to go to Disneyworld (we live in CA

and have already been to Disneyland twice) so that will probably be what

we'll do. Maybe the surrounding parks (the other Disney parks,

Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

Call your local Children wish or any similar group. There are many .They

all hook up with GIVE KIDS THE WORLD. this is where you want to ask for.

WDW in Orlando & Give Kid the world.& other attractions in Orlando.

They will send forms to docs so give the doc who will say he should go &

that he has a catastrophic illness. One who isn't shy to say he needs

this trip. BUT he is well enough to go NOW.......They MIGHT want to come

visit you......and will also want to ask HIM.........

It will be great . If he has ever been granted a wish before THEY WILL

NOT DO AGAIN. All compassion programs are linked together in computers.

Best wishes. It is a great trip for all the immediate family :

LOVE & HUGS, grandmomBEV

RE: Re: make a wish

I had a question about this. I remember someone on C-L saying that in

order for them to have a Make-A-Wish, the kid's PFTs have to be below x

amount or the doctor has to certify that they are very ill or something?

What are the guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral

pneumonia) and I don't want to wait until his health/hospitalizations

are so unpredictable that we can't plan ahead for a trip. Ricky has

unequivocably stated that he wants to go to Disneyworld (we live in CA

and have already been to Disneyland twice) so that will probably be what

we'll do. Maybe the surrounding parks (the other Disney parks,

Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

Call your local Children wish or any similar group. There are many .They

all hook up with GIVE KIDS THE WORLD. this is where you want to ask for.

WDW in Orlando & Give Kid the world.& other attractions in Orlando.

They will send forms to docs so give the doc who will say he should go &

that he has a catastrophic illness. One who isn't shy to say he needs

this trip. BUT he is well enough to go NOW.......They MIGHT want to come

visit you......and will also want to ask HIM.........

It will be great . If he has ever been granted a wish before THEY WILL

NOT DO AGAIN. All compassion programs are linked together in computers.

Best wishes. It is a great trip for all the immediate family :

LOVE & HUGS, grandmomBEV

RE: Re: make a wish

I had a question about this. I remember someone on C-L saying that in

order for them to have a Make-A-Wish, the kid's PFTs have to be below x

amount or the doctor has to certify that they are very ill or something?

What are the guidelines on this?

We are in the middle of a big hospital scare with Ricky (viral

pneumonia) and I don't want to wait until his health/hospitalizations

are so unpredictable that we can't plan ahead for a trip. Ricky has

unequivocably stated that he wants to go to Disneyworld (we live in CA

and have already been to Disneyland twice) so that will probably be what

we'll do. Maybe the surrounding parks (the other Disney parks,

Universal, etc.?) too?

Any advice/thoughts?

Becky, mom of Ricky (almost 7!) with CF and Andy (4) no CF.

[Guest guest]

Hi all,

had his CF appointment to all of you that I expressed my concerns about

a G tube, he actually gained two pounds in 3 months so at least he didn't lose

any. I neat pamphlet about create your own personal journal called

mycysticfibrosis.com I asked the doc what she thought maybe a way to keep him

keeping track of his own health and help with the enzyme issue. I said he eats

all the time if he only took his enzymes right he'd gain weight better and not

look so thin. But she gave him A+ checkup lungs sounded excellent, pfts were

great, sinuses looked great the rhinocourt is working to keep the polyps

shrunk. I then asked her about Make a Wish, believe it or not but she

considered him too healthy, or atleast the guidelines at Yale for Make a Wish

are. She said if they felt he wouldn't today be here to the age of 18 or if

for some reason there were issues with his lungs right now they are clear and

only culture staff. So that was he reasoning for saying not now. I guess I

should be happy for all that info. And if at some point feel we need to push

the issue of Make a Wish ask again.

mom to 10 3/4 wcf 9 we NF(Neurofibromotosis) and

Zachary 7 who I need to have blood test done because lately he bruises easily

but at his 7 year check up they said he looked good but to check it out.

Hopefully its nothing serious.

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

Hi all,

had his CF appointment to all of you that I expressed my concerns about

a G tube, he actually gained two pounds in 3 months so at least he didn't lose

any. I neat pamphlet about create your own personal journal called

mycysticfibrosis.com I asked the doc what she thought maybe a way to keep him

keeping track of his own health and help with the enzyme issue. I said he eats

all the time if he only took his enzymes right he'd gain weight better and not

look so thin. But she gave him A+ checkup lungs sounded excellent, pfts were

great, sinuses looked great the rhinocourt is working to keep the polyps

shrunk. I then asked her about Make a Wish, believe it or not but she

considered him too healthy, or atleast the guidelines at Yale for Make a Wish

are. She said if they felt he wouldn't today be here to the age of 18 or if

for some reason there were issues with his lungs right now they are clear and

only culture staff. So that was he reasoning for saying not now. I guess I

should be happy for all that info. And if at some point feel we need to push

the issue of Make a Wish ask again.

mom to 10 3/4 wcf 9 we NF(Neurofibromotosis) and

Zachary 7 who I need to have blood test done because lately he bruises easily

but at his 7 year check up they said he looked good but to check it out.

Hopefully its nothing serious.

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

Hi all,

had his CF appointment to all of you that I expressed my concerns about

a G tube, he actually gained two pounds in 3 months so at least he didn't lose

any. I neat pamphlet about create your own personal journal called

mycysticfibrosis.com I asked the doc what she thought maybe a way to keep him

keeping track of his own health and help with the enzyme issue. I said he eats

all the time if he only took his enzymes right he'd gain weight better and not

look so thin. But she gave him A+ checkup lungs sounded excellent, pfts were

great, sinuses looked great the rhinocourt is working to keep the polyps

shrunk. I then asked her about Make a Wish, believe it or not but she

considered him too healthy, or atleast the guidelines at Yale for Make a Wish

are. She said if they felt he wouldn't today be here to the age of 18 or if

for some reason there were issues with his lungs right now they are clear and

only culture staff. So that was he reasoning for saying not now. I guess I

should be happy for all that info. And if at some point feel we need to push

the issue of Make a Wish ask again.

mom to 10 3/4 wcf 9 we NF(Neurofibromotosis) and

Zachary 7 who I need to have blood test done because lately he bruises easily

but at his 7 year check up they said he looked good but to check it out.

Hopefully its nothing serious.

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

, Glad to hear 's check-up went so well. Sounds like they have a

different Make A Wish policy than other places. Like you said, you can check

into it again in a while.

Lori in Florida (to formerly of Maine)

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and

all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

, Glad to hear 's check-up went so well. Sounds like they have a

different Make A Wish policy than other places. Like you said, you can check

into it again in a while.

Lori in Florida (to formerly of Maine)

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and

all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

, Glad to hear 's check-up went so well. Sounds like they have a

different Make A Wish policy than other places. Like you said, you can check

into it again in a while.

Lori in Florida (to formerly of Maine)

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and

all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

Glad to hear 's appt. went well!

Shanna

mom of Triana, age 2 wcf

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and

all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

Glad to hear 's appt. went well!

Shanna

mom of Triana, age 2 wcf

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and

all

your kids, but especially of . She must be so depressed and sad about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

Lori I like your adding at the end formerly of Maine

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and

all

your kids, but especially of . She must be so depressed and sad

about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

Lori I like your adding at the end formerly of Maine

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you and

all

your kids, but especially of . She must be so depressed and sad

about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas

[Guest guest]

Cindy,

In 1993, 's doctor contacted The Brass Ring Society (based out

of Florida) because he wanted to give a surprise. I didn't even

know 's doctor set this up until the Brass Ring Society called

me!

Maybe Make-A-Wish has since changed their guidelines, but we were told

that you do have to be at a certain level of bad health before they'll

grant your wish. I guess it's because there are so many kids that they

want to reach the sickest ones first. That's understandable.

But the Brass Ring Society doesn't impose those guideslines. If you

have CF, you qualify based upon that alone. They're philosophy is they

want the kids to get their wishes while still healthy enough to enjoy

it.

It certainly was a memorable occasion for the whole family! They flew

us round trip to Orlando, Florida. We were greeted at the airport by

Brass Ring Society volunteers -- a retired couple and one of their

retired friends. They said they loved retirement, living in Florida

and volunteering for the BRS because they got to meet people from all

over the US.

They took us to get our rental car (also paid for the week!), but when

the learned what kind of car the rental company was giving us, one of

the volunteers protested and negotiated an upgrade: a brand new

minivan.

Our one-week stay at the hotel was completely paid for; we got

complimentary breakfast at the buffet every morning and the hotel

manager had a huge basket of fruit put in our room with a note

welcoming us.

The BRS gave us $300 to use for food and souvenirs. They gave us

several rolls of film and told us to take lots of pictures, then told

us to send the film to them afterward. They paid the cost of having

the film developed then sent the pictures to us!

They gave us 3-day passes to Disney World and a one-day pass to Sea

World (my kids loved that the most). got to meet his baseball

idol, former Mets catcher , and they let him be batboy

during a spring training practice for the Florida Marlins. This

was the Marlins' inaugnaral year.

But 's most memorable moment wasn't meeting -- yes, he's a

nice guy and does lots of charity work for cancer (his mom died of

cancer), but that part felt sort of staged. looked really

uncomfortable when met him and immediately asked how he was

feeling. knew then this was all about CF and it felt like pity.

Despite CF, was a normal, intelligent 14-year old boy who

had played baseball since he was 6 years old -- and was doggone good

at it too (lead his league in stolen bases, was pitcher but loved

playing shortstop, second or first base most).

No, the most memorable moment was during practice when first

baseman, Oresta Destrada, came over to after his turn at bat;

he put his hand on 's shoulder and leaned down whispering to him,

" You're doing a fine job. " Then he gave his batting gloves --

these huge, butter-soft black leather gloves. walked 10 feet off

the ground after that.

The next day we attended the season opener,and before the game all

these boys were crowded in the stands directly above the Marlins'

dugout, clutching balls and cards hoping to get the autographs of the

most important players. The players were on the field warming up, and

-- who was the announcer for the Marlins' -- was on the field

being interviewed about his newfound position.

desperately wanted to go over to see if he could get Destrade's

autograph so I through the bleachers with him to where the other boys

were crowded. And soon, Destrade came out of the dugout to warm up.

was suddenly shy and afraid to call out to him, he didn't think

he'd remember him! Normally I'd allow 's shyness but something

pushed me to push him -- so I said, " Just call out his name, do it! "

So he finally raised his voice high enough for Destrade to hear, and

Destrade turned around, spotted and waved, calling back, " Hi

! " You should have seen the jaws drop on those other boys!

held up his ball -- a universal sign any player understands to

mean " Will you autograph this? " In return, Destrade held up his glove,

waiting for 's pitch. He caught the ball then realized he didn't

have a pen -- so motioned us for a pen. I started digging through my

purse, found one and threw it to Destrade. Destrade signed the

ball and threw it back up to us, along with the pen.

When we got back home, three baseballs sat prominently on 's

shelf: the one signed by , the one signed by the Marlins

after batting practice... but the most special was the one signed only

by Destrade. He was the one who recognize the hopes, dreams and stars

in 's eyes -- not the CF.

Kim

Mom to (23 asthma and cf) and (20 asthma no cf)

[Guest guest]

Cindy,

In 1993, 's doctor contacted The Brass Ring Society (based out

of Florida) because he wanted to give a surprise. I didn't even

know 's doctor set this up until the Brass Ring Society called

me!

Maybe Make-A-Wish has since changed their guidelines, but we were told

that you do have to be at a certain level of bad health before they'll

grant your wish. I guess it's because there are so many kids that they

want to reach the sickest ones first. That's understandable.

But the Brass Ring Society doesn't impose those guideslines. If you

have CF, you qualify based upon that alone. They're philosophy is they

want the kids to get their wishes while still healthy enough to enjoy

it.

It certainly was a memorable occasion for the whole family! They flew

us round trip to Orlando, Florida. We were greeted at the airport by

Brass Ring Society volunteers -- a retired couple and one of their

retired friends. They said they loved retirement, living in Florida

and volunteering for the BRS because they got to meet people from all

over the US.

They took us to get our rental car (also paid for the week!), but when

the learned what kind of car the rental company was giving us, one of

the volunteers protested and negotiated an upgrade: a brand new

minivan.

Our one-week stay at the hotel was completely paid for; we got

complimentary breakfast at the buffet every morning and the hotel

manager had a huge basket of fruit put in our room with a note

welcoming us.

The BRS gave us $300 to use for food and souvenirs. They gave us

several rolls of film and told us to take lots of pictures, then told

us to send the film to them afterward. They paid the cost of having

the film developed then sent the pictures to us!

They gave us 3-day passes to Disney World and a one-day pass to Sea

World (my kids loved that the most). got to meet his baseball

idol, former Mets catcher , and they let him be batboy

during a spring training practice for the Florida Marlins. This

was the Marlins' inaugnaral year.

But 's most memorable moment wasn't meeting -- yes, he's a

nice guy and does lots of charity work for cancer (his mom died of

cancer), but that part felt sort of staged. looked really

uncomfortable when met him and immediately asked how he was

feeling. knew then this was all about CF and it felt like pity.

Despite CF, was a normal, intelligent 14-year old boy who

had played baseball since he was 6 years old -- and was doggone good

at it too (lead his league in stolen bases, was pitcher but loved

playing shortstop, second or first base most).

No, the most memorable moment was during practice when first

baseman, Oresta Destrada, came over to after his turn at bat;

he put his hand on 's shoulder and leaned down whispering to him,

" You're doing a fine job. " Then he gave his batting gloves --

these huge, butter-soft black leather gloves. walked 10 feet off

the ground after that.

The next day we attended the season opener,and before the game all

these boys were crowded in the stands directly above the Marlins'

dugout, clutching balls and cards hoping to get the autographs of the

most important players. The players were on the field warming up, and

-- who was the announcer for the Marlins' -- was on the field

being interviewed about his newfound position.

desperately wanted to go over to see if he could get Destrade's

autograph so I through the bleachers with him to where the other boys

were crowded. And soon, Destrade came out of the dugout to warm up.

was suddenly shy and afraid to call out to him, he didn't think

he'd remember him! Normally I'd allow 's shyness but something

pushed me to push him -- so I said, " Just call out his name, do it! "

So he finally raised his voice high enough for Destrade to hear, and

Destrade turned around, spotted and waved, calling back, " Hi

! " You should have seen the jaws drop on those other boys!

held up his ball -- a universal sign any player understands to

mean " Will you autograph this? " In return, Destrade held up his glove,

waiting for 's pitch. He caught the ball then realized he didn't

have a pen -- so motioned us for a pen. I started digging through my

purse, found one and threw it to Destrade. Destrade signed the

ball and threw it back up to us, along with the pen.

When we got back home, three baseballs sat prominently on 's

shelf: the one signed by , the one signed by the Marlins

after batting practice... but the most special was the one signed only

by Destrade. He was the one who recognize the hopes, dreams and stars

in 's eyes -- not the CF.

Kim

Mom to (23 asthma and cf) and (20 asthma no cf)

[Guest guest]

Cindy,

In 1993, 's doctor contacted The Brass Ring Society (based out

of Florida) because he wanted to give a surprise. I didn't even

know 's doctor set this up until the Brass Ring Society called

me!

Maybe Make-A-Wish has since changed their guidelines, but we were told

that you do have to be at a certain level of bad health before they'll

grant your wish. I guess it's because there are so many kids that they

want to reach the sickest ones first. That's understandable.

But the Brass Ring Society doesn't impose those guideslines. If you

have CF, you qualify based upon that alone. They're philosophy is they

want the kids to get their wishes while still healthy enough to enjoy

it.

It certainly was a memorable occasion for the whole family! They flew

us round trip to Orlando, Florida. We were greeted at the airport by

Brass Ring Society volunteers -- a retired couple and one of their

retired friends. They said they loved retirement, living in Florida

and volunteering for the BRS because they got to meet people from all

over the US.

They took us to get our rental car (also paid for the week!), but when

the learned what kind of car the rental company was giving us, one of

the volunteers protested and negotiated an upgrade: a brand new

minivan.

Our one-week stay at the hotel was completely paid for; we got

complimentary breakfast at the buffet every morning and the hotel

manager had a huge basket of fruit put in our room with a note

welcoming us.

The BRS gave us $300 to use for food and souvenirs. They gave us

several rolls of film and told us to take lots of pictures, then told

us to send the film to them afterward. They paid the cost of having

the film developed then sent the pictures to us!

They gave us 3-day passes to Disney World and a one-day pass to Sea

World (my kids loved that the most). got to meet his baseball

idol, former Mets catcher , and they let him be batboy

during a spring training practice for the Florida Marlins. This

was the Marlins' inaugnaral year.

But 's most memorable moment wasn't meeting -- yes, he's a

nice guy and does lots of charity work for cancer (his mom died of

cancer), but that part felt sort of staged. looked really

uncomfortable when met him and immediately asked how he was

feeling. knew then this was all about CF and it felt like pity.

Despite CF, was a normal, intelligent 14-year old boy who

had played baseball since he was 6 years old -- and was doggone good

at it too (lead his league in stolen bases, was pitcher but loved

playing shortstop, second or first base most).

No, the most memorable moment was during practice when first

baseman, Oresta Destrada, came over to after his turn at bat;

he put his hand on 's shoulder and leaned down whispering to him,

" You're doing a fine job. " Then he gave his batting gloves --

these huge, butter-soft black leather gloves. walked 10 feet off

the ground after that.

The next day we attended the season opener,and before the game all

these boys were crowded in the stands directly above the Marlins'

dugout, clutching balls and cards hoping to get the autographs of the

most important players. The players were on the field warming up, and

-- who was the announcer for the Marlins' -- was on the field

being interviewed about his newfound position.

desperately wanted to go over to see if he could get Destrade's

autograph so I through the bleachers with him to where the other boys

were crowded. And soon, Destrade came out of the dugout to warm up.

was suddenly shy and afraid to call out to him, he didn't think

he'd remember him! Normally I'd allow 's shyness but something

pushed me to push him -- so I said, " Just call out his name, do it! "

So he finally raised his voice high enough for Destrade to hear, and

Destrade turned around, spotted and waved, calling back, " Hi

! " You should have seen the jaws drop on those other boys!

held up his ball -- a universal sign any player understands to

mean " Will you autograph this? " In return, Destrade held up his glove,

waiting for 's pitch. He caught the ball then realized he didn't

have a pen -- so motioned us for a pen. I started digging through my

purse, found one and threw it to Destrade. Destrade signed the

ball and threw it back up to us, along with the pen.

When we got back home, three baseballs sat prominently on 's

shelf: the one signed by , the one signed by the Marlins

after batting practice... but the most special was the one signed only

by Destrade. He was the one who recognize the hopes, dreams and stars

in 's eyes -- not the CF.

Kim

Mom to (23 asthma and cf) and (20 asthma no cf)

[Guest guest]

Well said Cindy. That is the way it was explained to me also. What is also

unusual is that my step son had leukemia, his wish was granted 11 years ago. He

is now a healthy adult.

Please keep trying...every child deserves a wish.

chronic illness in life

Rosemary, I loved 's wonderful post. However, chronic worrying

is so hard, and with little support as well. I think so often of you

and all

your kids, but especially of . She must be so depressed and sad

about

her health. I hope that those doctors can do more for her,

and I hope that things will therefore be a bit easier for you.

Love to you, and to all parents coping with so much,

n Rojas