Re: Make a Wish - Lego Land

[Guest guest]

Laurel,

Walt Disney World (Florida) has a lego store in their shopping district

that has big lego sculptures outside. I remember a giant robot, and a

flying saucer, and my personal favorite--a sea serpent in the lake. I

think there are tables where you can sit and build things, too. Maybe if

he went there while he was at Disney World, he could sort of get both

wishes.

Here's a link with some pictures to see if it looks like he might like

it: http://www.kidscape.com/articles/lego.html

-- Mom to:

Emilie (15), cerebral palsy; also undiagnosed episodic vomiting,

flushing, pallor, purple hands after meals, purple when chilled, dark

circles under eyes, sudden drowsiness, fatigue, low-grade fevers, reduced

muscle tone, glassy eyes, dilated pupils, irritability, diarrhea,

constipation, tachycardia, heat intolerance, difficulty with fasting,

etc. Positive response to carnitine (improved energy & mood)

Kaitlin (15), cerebral palsy, asthma, mild autonomic symptoms

Ian (20) migraines

[Guest guest]

Hi,

We ewnt to Disney world. Stayed at Give Kids the world. It was amazing. Everyone from my parent in their 60"s to my son who was 17 and my 7 year old daughter had a ball. I'd push for Disney !!!!!

Robin

[Guest guest]

HI, my son just also got approved for disney. congrats for your wish---

although I wish our kids wer'ent eligible.!

It's your son's dream, I would let HIM decide!

[Guest guest]

HI, my son just also got approved for disney. congrats for your wish---

although I wish our kids wer'ent eligible.!

It's your son's dream, I would let HIM decide

can anyone tell a little about the process and how involved the dr has to be...as so many of us know, our docs don't always support things we want to do b/c they think we are crazy and overbearing and persistant...just wondered how it all worked...aft er we get diagnosed I am considering trying it...

deb

[Guest guest]

One thing to keep in mind is the humidity. My brother lives in Fort Lauderdale

and it gets real humid starting in June and even stays in the high 80's around

September. So I would choose the month carefully if your son can't tolerate the

high heat and especially the humidity. But if you go, try to do things in the

morning when it isn't that hot out. Of course, you could always check out

Disney Land in California. I know it gets hot there, but I believe not until

around late June and it isn't as humid as Florida.

N. mom to Leah (who turned a big 4 today!!!)

Jack and Sue wrote:

> Hi Laurel,

> Congrats on the MAW trip!! That group is awsome!! With regard to

> Legoland, while I'm not from California, we have been there. I would not

> recommend it for an almost 12 year old. The rides are all kid sized and

> mild. The mini Lego buildings and cities are great, but for excitablility

> for a 12 year old, it rates as fun as watching paint dry. IMHO, of

> course. It's much better suited for the under 10 crowd. Accessiblility

> was fine and there were no line passes for the disabled. We could get a

> pass to use if we HAD to. They made it sound like use it only if the kid is

> dying.

> My vote would be DisneyWorld!!!! wanted that for his wish trip

> and it was awsome!!!! We got a full seven days of fun at DW, Universal

> Studios and Sea World. We also visited Gatorland and, at the time they were

> popular, a dinner show at the American Gladiators place. We stayed at

> Disney for 5 days and then Give Kids The World (www.gktw.com) for 2. We got

> a van at our disposal plus enough money to pay for food, souveniers, etc,

> and 5 rolls of film!! They make sure you have enough of everything.

> DW was great!!! We got the royal treatment all the way!!!! No waiting

> in lines, private time with the characters so we could take pictures, free

> t-shirt and lunch at Hard Rock (Universal Studios). It was wonderful!!!

> The only rotten experience was with Delta Airlines in Orlando. And it was

> with one Ahole. I wish I would have written a letter of complaint back

> then. He was just a pain and didn't let us board early when I told him

> we needed extra time. They found out when we held up the line. They then

> made US wait. I was not a happy camper! Luckily that was on our way

> home so it didn't spoil anything.

> OK, that's my opinion. Have a great time no matter where you

> decide!

>

> Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

> 11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

> w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

> http://u2.lvcm.com/jscb

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

In a message dated 4/29/02 3:41:34 PM Pacific Daylight Time,

VisibleWorship@... writes:

<< can anyone tell a little about the process and how involved the dr has to

be...as so many of us know, our docs don't always support things we want to

do b/c they think we are crazy and overbearing and persistant...just

wondered

how it all worked...aft er we get diagnosed I am considering trying it...

deb

>>

It most definitely is " life threatening before age 18 " , NOT terminal. My

kids and I have gotten very involved with MAW and fundraising (my kiddos

having had 2 fundraisers for MAW since their trip) because they wanted to

give back after our wonderful trip for 's wish. now qualifies

too, with his metabolic diagnosis, but, as we told our old (and now again

new) PCP today, we're waiting because of all of the MSBP false allegations,

etc. When things are unsettled as they are now, it would take away from the

joy of a MAW trip for .

I would definitely ask your doctor first, even if you self refer, since they

will have to certify the diagnosis as " life threatening. "

Take care, Dena

[Guest guest]

Hi Deb,

You can request a wish from MAW yourself. That's what we did. My

husband was the one who actually called. What they do is take info and then

contact the doctor. The doctor in turn fills out paperwork whether or not

your child will qualify. At first we were turned down because of

miscommunication, but we kept trying and got approved. Pick a doc who knows

your child's condition (not just any doc will do) and who will say yes. The

disease must be life threatening, not necessarily terminal. HTH!!

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

> can anyone tell a little about the process and how involved the dr has to

> be...as so many of us know, our docs don't always support things we want

to

> do b/c they think we are crazy and overbearing and persistant...just

wondered

> how it all worked...aft er we get diagnosed I am considering trying it...

[Guest guest]

Hi Deb,

You can request a wish from MAW yourself. That's what we did. My

husband was the one who actually called. What they do is take info and then

contact the doctor. The doctor in turn fills out paperwork whether or not

your child will qualify. At first we were turned down because of

miscommunication, but we kept trying and got approved. Pick a doc who knows

your child's condition (not just any doc will do) and who will say yes. The

disease must be life threatening, not necessarily terminal. HTH!!

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

> can anyone tell a little about the process and how involved the dr has to

> be...as so many of us know, our docs don't always support things we want

to

> do b/c they think we are crazy and overbearing and persistant...just

wondered

> how it all worked...aft er we get diagnosed I am considering trying it...

[Guest guest]

In a message dated 4/30/02 7:47:01 AM Pacific Daylight Time,

sorehead@... writes:

<< Good question Deb. I was wondering the same thing. Leah is doing

sooooo well right now. But I know things can change with any type of

illness. She is doing great in strength, wanting to do things for

herself and other things. So I don't want to ask MAW if she doesn't

need it. >>

MAW makes it very clear that it is for life threatening illness!!! I'm

sitting here looking at a fundraising brochure for MAW right now, that says

that many of the MAW kiddos " beat their illness. "

Take care, Dena

[Guest guest]

In a message dated 4/30/02 7:47:01 AM Pacific Daylight Time,

sorehead@... writes:

<< Good question Deb. I was wondering the same thing. Leah is doing

sooooo well right now. But I know things can change with any type of

illness. She is doing great in strength, wanting to do things for

herself and other things. So I don't want to ask MAW if she doesn't

need it. >>

MAW makes it very clear that it is for life threatening illness!!! I'm

sitting here looking at a fundraising brochure for MAW right now, that says

that many of the MAW kiddos " beat their illness. "

Take care, Dena

[Guest guest]

In a message dated 4/30/02 7:47:01 AM Pacific Daylight Time,

sorehead@... writes:

<< Good question Deb. I was wondering the same thing. Leah is doing

sooooo well right now. But I know things can change with any type of

illness. She is doing great in strength, wanting to do things for

herself and other things. So I don't want to ask MAW if she doesn't

need it. >>

MAW makes it very clear that it is for life threatening illness!!! I'm

sitting here looking at a fundraising brochure for MAW right now, that says

that many of the MAW kiddos " beat their illness. "

Take care, Dena

[Guest guest]

MAW makes it very clear that it is for life threatening illness!!! I'm

sitting here looking at a fundraising brochure for MAW right now, that says

that many of the MAW kiddos "beat their illness."

so th e dx just has to be something that is life threatnening, but they don't have to be on thier death bed...is that what you are saying...I guess they are sayign that if a child is dx with brain cancer but they end up curing him, then that is okay...since he took the trip while h e was acute??? It is my understanding and correct me if I am wrong, but isn't all mito life-threatening?

deb

[Guest guest]

MAW makes it very clear that it is for life threatening illness!!! I'm

sitting here looking at a fundraising brochure for MAW right now, that says

that many of the MAW kiddos "beat their illness."

so th e dx just has to be something that is life threatnening, but they don't have to be on thier death bed...is that what you are saying...I guess they are sayign that if a child is dx with brain cancer but they end up curing him, then that is okay...since he took the trip while h e was acute??? It is my understanding and correct me if I am wrong, but isn't all mito life-threatening?

deb

[Guest guest]

She is doing great in strength, wanting to do things for herself and other things. So I don't want to ask MAW if she doesn't need it.

I guess my feeling is that has declined so quickly that altho he is not in a very bad situation now, I do't wanna wait until he is too sick to enjoy it or even go... isnt' that kind of the point? that would be my deal...I mean, its possible at some point that we could go to disney if we got the money together but it is real stretch now that I can't work b/c of taking care of everything...s owouldn't it be better for him to go now while he will be able t remember it when he gets worse?

deb

[Guest guest]

In a message dated 4/30/02 8:33:49 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< o th e dx just has to be something that is life threatnening, but they

don't have to be on thier death bed...is that what you are saying...I guess

they are sayign that if a child is dx with brain cancer but they end up

curing him, then that is okay...since he took the trip while h e was

acute???

It is my understanding and correct me if I am wrong, but isn't all mito

life-threatening?

deb >>

Many cancer kids go AFTER they are done with treatment and feeling great!

MAW used to be for terminal illness, but when kids were offered a wish, it

became equated with a " death wish. " It was changed to life threatening

illness and all the doc has to do is certify that the child's illness is life

threatening by the age of 18. I'm not a doc so I can't answer about all mito

being life threatening. went based on his dysautonomia diagnosis.

Starlight Foundation told us about MAW (since I previously had thought it was

for terminal illness only) and said that if didn't qualify for MAW

(because they said MAW's criteria is more strict), then he would most likely

qualify for Starlight. There are lots of wonderful wish organizations out

there and Starlight does wonderful stuff through their KAN (Kids Activity

Network) in local children's hospital centers.

I would definitely recommend getting in touch with your local Starlight

Foundation chapter and ask about getting on the email list for KAN. KAN

provides ongoing activities for families to do fun things together....science

museums, picnics, theatre productions, etc. And, the other family members or

parents can go alone too, as a respite time away if they want.

Dena

[Guest guest]

Good question Deb. I was wondering the same thing. Leah is

doing sooooo well right now. But I know things can change with any

type of illness. She is doing great in strength, wanting to do things

for herself and other things. So I don't want to ask MAW if she doesn't

need it. And not knowing how much she would comprehend is another

thing. Do you contact your local MAW foundation? There are

many experts on this site that will tell us how and when MAW is important

for you and your family.

N. mom to Leah who is now 4 years old.

VisibleWorship@... wrote:

In

a message dated 4/29/02 11:06:17 AM Central Daylight Time, designdds@...

writes:

HI,

my son just also got approved for disney. congrats for your

wish---

although I wish our

kids wer'ent eligible.!

It's your son's dream, I

would let HIM decide

can anyone tell a little

about the process and how involved the dr has to be...as so many of us

know, our docs don't always support things we want to do b/c they think

we are crazy and overbearing and persistant...just wondered how it all

worked...aft er we get diagnosed I am considering trying it...

deb

Please contact mito-owner

with any problems or questions.

[Guest guest]

Good question Deb. I was wondering the same thing. Leah is

doing sooooo well right now. But I know things can change with any

type of illness. She is doing great in strength, wanting to do things

for herself and other things. So I don't want to ask MAW if she doesn't

need it. And not knowing how much she would comprehend is another

thing. Do you contact your local MAW foundation? There are

many experts on this site that will tell us how and when MAW is important

for you and your family.

N. mom to Leah who is now 4 years old.

VisibleWorship@... wrote:

In

a message dated 4/29/02 11:06:17 AM Central Daylight Time, designdds@...

writes:

HI,

my son just also got approved for disney. congrats for your

wish---

although I wish our

kids wer'ent eligible.!

It's your son's dream, I

would let HIM decide

can anyone tell a little

about the process and how involved the dr has to be...as so many of us

know, our docs don't always support things we want to do b/c they think

we are crazy and overbearing and persistant...just wondered how it all

worked...aft er we get diagnosed I am considering trying it...

deb

Please contact mito-owner

with any problems or questions.

[Guest guest]

Good question Deb. I was wondering the same thing. Leah is

doing sooooo well right now. But I know things can change with any

type of illness. She is doing great in strength, wanting to do things

for herself and other things. So I don't want to ask MAW if she doesn't

need it. And not knowing how much she would comprehend is another

thing. Do you contact your local MAW foundation? There are

many experts on this site that will tell us how and when MAW is important

for you and your family.

N. mom to Leah who is now 4 years old.

VisibleWorship@... wrote:

In

a message dated 4/29/02 11:06:17 AM Central Daylight Time, designdds@...

writes:

HI,

my son just also got approved for disney. congrats for your

wish---

although I wish our

kids wer'ent eligible.!

It's your son's dream, I

would let HIM decide

can anyone tell a little

about the process and how involved the dr has to be...as so many of us

know, our docs don't always support things we want to do b/c they think

we are crazy and overbearing and persistant...just wondered how it all

worked...aft er we get diagnosed I am considering trying it...

deb

Please contact mito-owner

with any problems or questions.

[Guest guest]

Hi All,

Just to clarify some things that I have been reading in the posts. Make A Wish is for all children, who have suffered, or are battling a life threatening disease. They can be in remission, or not. They want to help children experience a dream come true, to help cushion the blow from the unfortunate experiences they have been through. They are one of the wonderful organizations who do this for our kids. The only real stipulation is that your child has to be under 18. Any child that has been through what are kids have been through are eligible. My nephew had Leukemia, 3 years after remission he went on a MAW trip. I donated bone marrow to a boy who had Aplastic Anemia, he is in remission, and he had a dream shopping spree from MAW.

A local orginization in our town called A Wish Come True sent my family to give kids the World/Disney/Universal Studios/ and a number of other places during our 6 day stay. Our children are eligible for these wonderful "Wishes", no matter how severly they are affected. Also, as a side note, the Heat in Florida is alot on our kids, my son did ended up in the hospital for two days, even though we tried to keep him hydrated, and made him used his wheelchair, the heat down there last May, was too much. His Gut Dysmotility acted up. I just wished we had gone there somewhere from Oct.-March. If you do get a chance to go just keep your child as cool as possible, wet hats, shirts, or get one of those cooling devices people were discussing last week online. If not go to the Parks early, take Mid Day off to enjoy the pool, or aircondtioned Arcade, then jaunt out again after the mid day/afternoon sun lightens up.

Hope I helped,

Robin

[Guest guest]

YES,

Get him out while he can enjoy it !!!!!!!!!!!!!!!!!!!!

Go For IT !!

Robin

[Guest guest]

Deb,

In my honest opinion, I would say do it now while you know he can enjoy it. Miranda was approved for the wish in August and we decieded to wait till April to take it because she is always sick all winter long and we wanted her to be able to make the most of it and enjoy it while feeling half decent. Now I wish we would have waited till later in May because she was pretty sick anyway.

So I guess what I am trying to say, do it while you can , no one knows what the future holds and then there will be no regrets.

Re: Make a Wish - Lego Land

She is doing great in strength, wanting to do things for herself and other things. So I don't want to ask MAW if she doesn't need it. I guess my feeling is that has declined so quickly that altho he is not in a very bad situation now, I do't wanna wait until he is too sick to enjoy it or even go... isnt' that kind of the point? that would be my deal...I mean, its possible at some point that we could go to disney if we got the money together but it is real stretch now that I can't work b/c of taking care of everything...s owouldn't it be better for him to go now while he will be able t remember it when he gets worse?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Hello all, We applied for our trip thru Magic Moments in Birmingham. We are going to Disney in May and staying at GKTW. We are very excited about our trip. We applied in the fall and a couple of weeks after the paper work was in -- we were approved.We were given our first choice date also. They told us to pick three dates. Any pointers from anyone? We have a direct flight from B'ham and they are renting us a van. is in a wheelchair. Just FYI MAW never called me back.

Thanks,

(Mom to --8 with mito and Tyler 11)

-----Original Message-----From: Steve and Sent: Tuesday, April 30, 2002 1:33 PMTo: Mito Subject: Re: Make a Wish - Lego Land

Deb,

In my honest opinion, I would say do it now while you know he can enjoy it. Miranda was approved for the wish in August and we decieded to wait till April to take it because she is always sick all winter long and we wanted her to be able to make the most of it and enjoy it while feeling half decent. Now I wish we would have waited till later in May because she was pretty sick anyway.

So I guess what I am trying to say, do it while you can , no one knows what the future holds and then there will be no regrets.

Re: Make a Wish - Lego Land

She is doing great in strength, wanting to do things for herself and other things. So I don't want to ask MAW if she doesn't need it. I guess my feeling is that has declined so quickly that altho he is not in a very bad situation now, I do't wanna wait until he is too sick to enjoy it or even go... isnt' that kind of the point? that would be my deal...I mean, its possible at some point that we could go to disney if we got the money together but it is real stretch now that I can't work b/c of taking care of everything...s owouldn't it be better for him to go now while he will be able t remember it when he gets worse?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Hello all, We applied for our trip thru Magic Moments in Birmingham. We are going to Disney in May and staying at GKTW. We are very excited about our trip. We applied in the fall and a couple of weeks after the paper work was in -- we were approved.We were given our first choice date also. They told us to pick three dates. Any pointers from anyone? We have a direct flight from B'ham and they are renting us a van. is in a wheelchair. Just FYI MAW never called me back.

Thanks,

(Mom to --8 with mito and Tyler 11)

-----Original Message-----From: Steve and Sent: Tuesday, April 30, 2002 1:33 PMTo: Mito Subject: Re: Make a Wish - Lego Land

Deb,

In my honest opinion, I would say do it now while you know he can enjoy it. Miranda was approved for the wish in August and we decieded to wait till April to take it because she is always sick all winter long and we wanted her to be able to make the most of it and enjoy it while feeling half decent. Now I wish we would have waited till later in May because she was pretty sick anyway.

So I guess what I am trying to say, do it while you can , no one knows what the future holds and then there will be no regrets.

Re: Make a Wish - Lego Land

She is doing great in strength, wanting to do things for herself and other things. So I don't want to ask MAW if she doesn't need it. I guess my feeling is that has declined so quickly that altho he is not in a very bad situation now, I do't wanna wait until he is too sick to enjoy it or even go... isnt' that kind of the point? that would be my deal...I mean, its possible at some point that we could go to disney if we got the money together but it is real stretch now that I can't work b/c of taking care of everything...s owouldn't it be better for him to go now while he will be able t remember it when he gets worse?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Hello all, We applied for our trip thru Magic Moments in Birmingham. We are going to Disney in May and staying at GKTW. We are very excited about our trip. We applied in the fall and a couple of weeks after the paper work was in -- we were approved.We were given our first choice date also. They told us to pick three dates. Any pointers from anyone? We have a direct flight from B'ham and they are renting us a van. is in a wheelchair. Just FYI MAW never called me back.

Thanks,

(Mom to --8 with mito and Tyler 11)

-----Original Message-----From: Steve and Sent: Tuesday, April 30, 2002 1:33 PMTo: Mito Subject: Re: Make a Wish - Lego Land

Deb,

In my honest opinion, I would say do it now while you know he can enjoy it. Miranda was approved for the wish in August and we decieded to wait till April to take it because she is always sick all winter long and we wanted her to be able to make the most of it and enjoy it while feeling half decent. Now I wish we would have waited till later in May because she was pretty sick anyway.

So I guess what I am trying to say, do it while you can , no one knows what the future holds and then there will be no regrets.

Re: Make a Wish - Lego Land

She is doing great in strength, wanting to do things for herself and other things. So I don't want to ask MAW if she doesn't need it. I guess my feeling is that has declined so quickly that altho he is not in a very bad situation now, I do't wanna wait until he is too sick to enjoy it or even go... isnt' that kind of the point? that would be my deal...I mean, its possible at some point that we could go to disney if we got the money together but it is real stretch now that I can't work b/c of taking care of everything...s owouldn't it be better for him to go now while he will be able t remember it when he gets worse?deb Please contact mito-owner with any problems or questions.