RE: Sharada visiting Phoenix AZ

[Guest guest]

Shrikant,

I hope everything works out well for you and you get a visa for

Sharada, I know how difficult immigration has gotten overseas and

here, too.

Unfortunaly, we live way too far from Phoenix but I am sure we have

some people on this list that are in or around the Phoenix area,

can't think of anybody, though.

Best wishes and keep us posted,

(who is so happy that she does not have to deal with the new

immigration system) mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> Dear Friends,

> Writing after a long time. Next week we are planning a US visit. My

> daughter Sharada (6 yowcf) will be coming to US, for the first

time.

> I am coming to Honeywell Phoenix for official work for 2 weeks. We

> are taking this opportunity to bring Sharada with me. In Phoenix,

we

> will be meeting Dr. Peggy Radford from PCH. This will be first time

> that Sharada will be checked in a real CF clinic. After many

> episodes of Pseudomonas and after last admission (17 days) for

> Mycoplasma Pneumonia, Sharada is in high spirit, and looking

forward

> to a trip to Disneylad (She does not care about anything else).

> It all depends upon getting a US visa. As after 9/11, US visa

> procedures are very strict. Our apointment with US Embassy is on

> 11th Aug.

> In the meanwhile, I would like to communicate with CF parents in US

> and in Phoenix in perticular. As we come from the part of the world

> where CF is never heard of, we request some help from Cf parents.

> Thanks a lot,

> SHRIKANT KAMBLE

> Father of Sharada 6 yowcf

> Abu Dhabi, UAE

[Guest guest]

Shrikant,

I sure hope that all works out for you and your daughter to come

and take that trip to Disney land as well as visit a CF center. I am

sure that if you are given the opportunity you will really love what you

find.

Our son is 7 months old and was diagnosed at 2 weeks. It is sure

a blessing to have those centers here. Well I wish you all luck in your

adventure. We are from Florida.

Ashauna mother of 2 ( 5 year old w/o cf and 7 month old w/cf

[Guest guest]

Are you coming to FLORIDA.??....We have Disney World here & the Disneyland

is in CA. Both places have great clinics I think . It appears that way also

from so many others that actually attend them too.( I also live in FL .

(Orlando) 7 know most all the docs & clinic staffs really well. Holler if

it's FL your coming too & have any problems ..I will help where I can

1- -toll free .....

I also would love you all to stop by . I have the CF Pharmacy & same phone

#. Even after hours they can reach me or take message to call you back. BUT

we're easy to get to & I would love you all to drop by ....633 East Colonial

,easy to get to .

Have a great time .

LOVE & HUGS, grandmoMBEV

Beverley Donelson

Re: Sharada visiting Phoenix AZ

Shrikant,

I sure hope that all works out for you and your daughter to come

and take that trip to Disney land as well as visit a CF center. I am

sure that if you are given the opportunity you will really love what you

find.

Our son is 7 months old and was diagnosed at 2 weeks. It is sure

a blessing to have those centers here. Well I wish you all luck in your

adventure. We are from Florida.

Ashauna mother of 2 ( 5 year old w/o cf and 7 month old w/cf

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

I live in Florida now, Ummm Fort walton beach up in the panhandle. We

have just recently moved here about 6 months ago. Our cfer was just

about a month old.

I know that when my husband comes home from Iraq we are going to

try to take a trip to Disney World for my oldest ( 5 ) If we do be

great to get info from you

Ashauna

[Guest guest]

By all means I will look forward to that .I pray he will be home soon. We

have several very close to us over there too.

LOVE & HUGS< grandmomBEV

RE: Sharada visiting Phoenix AZ

I live in Florida now, Ummm Fort walton beach up in the panhandle. We

have just recently moved here about 6 months ago. Our cfer was just

about a month old.

I know that when my husband comes home from Iraq we are going to

try to take a trip to Disney World for my oldest ( 5 ) If we do be

great to get info from you

Ashauna

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Shirkant,

I am glad that you will be visiting the USA with Sharada. I hope

that the visit to the CF clinic is beneficial. If there is any way

that I can help, please let me know. I live in Ohio and work for

Honeywell.

Good luck and please keep us posted.

Gale

[Guest guest]

Bev,

They say December 3, but then they say don't count on it for him

to come home.

Ashauna Military frusterated wife. I know the cause so I am glad but I

want my family together again.

[Guest guest]

Shrikant! Good luck tomorrow! Try to look very British and sweet!

Love to you all,

n Rojas

[Guest guest]

Hello Gale,

We had e-mail contact before. How is your grand daughter doing? As

far as our visit is concerned we are keeping our fingers crossed. Our

appoingment with US Embassy in UAE is tommorrow. We are hoping for

the best.

I will update you on any developments

Shrikant

> Shirkant,

>

> I am glad that you will be visiting the USA with Sharada. I hope

> that the visit to the CF clinic is beneficial. If there is any way

> that I can help, please let me know. I live in Ohio and work for

> Honeywell.

>

> Good luck and please keep us posted.

>

> Gale

[Guest guest]

Grandmon Bev

Thanks for your wishes. As we are going to Phoenix, the disneyland in

LA will be nearer to us. If everything goes well be will be spending

one weekend in disneyland LA. Sharada is eager to meet her friends

(!) Cinderella, Snowwhite and Mulan.

Love

Shrikant

> By all means I will look forward to that .I pray he will be home

soon. We

> have several very close to us over there too.

>

> LOVE & HUGS< grandmomBEV

>

> RE: Sharada visiting Phoenix AZ

>

>

> I live in Florida now, Ummm Fort walton beach up in the

panhandle. We

> have just recently moved here about 6 months ago. Our cfer was just

> about a month old.

> I know that when my husband comes home from Iraq we are going

to

> try to take a trip to Disney World for my oldest ( 5 ) If we do be

> great to get info from you

>

> Ashauna

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Howdeeeeee,

I am so glad you at least have a date, we'll pray that it will hold

thru... My friend I spoke of is supposed to be home in NOV. BUtttttttt, this

is the third " return " date he has had. His 4 kids are going batty, His wife

has allot of help , BUT , misses him so much. ..he is like another son to

me. He has been best friend of my son & daughters since 6th grade. He is 44

now:)::

Well , gal , you & all these folks are really getting some heavy duty

prayers & best wishes now!!

LOVE & HUGS, grandmomBEV

RE: Sharada visiting Phoenix AZ

Bev,

They say December 3, but then they say don't count on it for him

to come home.

Ashauna Military frusterated wife. I know the cause so I am glad but I

want my family together again.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Hi there, I hope your trip will be one of great joy. It is nice you will

get to visit Disneyland. It is really oodles of fun. If she were here, she

would get to meet them for sure(As I said . one of my granddaughters is her

at our park (there are 3 of each character ).....Make sure that you tell the

folks at guest relations that your there & she has CF 7 wants to meet with

them. They MIGHT arrange a special wee gathering for you all. They do for

the wish kids, but just ask at that window. cant hurt & doesn't cost

anything. ....If not there are areas that they stand & are there at

different times. there is a written schedule to find those times so you all

wont miss them. HAVE A GREAT TIME!!!

Love & hugs, grandmomBEV

RE: Sharada visiting Phoenix AZ

>

>

> I live in Florida now, Ummm Fort walton beach up in the

panhandle. We

> have just recently moved here about 6 months ago. Our cfer was just

> about a month old.

> I know that when my husband comes home from Iraq we are going

to

> try to take a trip to Disney World for my oldest ( 5 ) If we do be

> great to get info from you

>

> Ashauna

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Bev,

Thanks for the prayers I know he needs them. It is really ugly over

there right now. I am sure that your friends are going madddddd. I

know that is heart breaking to think they are coming home and then it

gets backdated.

I send my best to them as well

Ashauna

[Guest guest]

At the park in Florida, we were looking for one character in particular and when

mentioned to a person in a booth at one of the show he looked it up for

us on his computer where and when to find her. Then he came into the show

before it started to tell us where to go the next day. We didn't even ask him

where to find her (Daisy Duck) He just looked it up on his own, to help us make

happy. It was SOOO nice because it was the character she wanted to see

and we had been looking for her. so if they don't set up a special thing for

her, at least you know you can ask where to go to find specific characters. I

hope you BOTH have a great time!

RE: Sharada visiting Phoenix AZ

>

>

> I live in Florida now, Ummm Fort walton beach up in the

panhandle. We

> have just recently moved here about 6 months ago. Our cfer was just

> about a month old.

> I know that when my husband comes home from Iraq we are going

to

> try to take a trip to Disney World for my oldest ( 5 ) If we do be

> great to get info from you

>

> Ashauna

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

YES, they generally have certain special places that they have to go .They

really don't walk around all over. The areas are selected so they can get

good pictures & the kids(big ones too :) can get in them too. Carly just

loves it . She is going to stay on even while at college. She rides in the

chariot during the parade too . I know your wee one will be soooo happy.

LOVE & HUGS,

GrandmomBEV

Re: Re: Sharada visiting Phoenix AZ

At the park in Florida, we were looking for one character in particular and

when mentioned to a person in a booth at one of the show he looked it

up for us on his computer where and when to find her. Then he came into the

show before it started to tell us where to go the next day. We didn't even

ask him where to find her (Daisy Duck) He just looked it up on his own, to

help us make happy. It was SOOO nice because it was the character she

wanted to see and we had been looking for her. so if they don't set up a

special thing for her, at least you know you can ask where to go to find

specific characters. I hope you BOTH have a great time!

RE: Sharada visiting Phoenix AZ

>

>

> I live in Florida now, Ummm Fort walton beach up in the

panhandle. We

> have just recently moved here about 6 months ago. Our cfer was just

> about a month old.

> I know that when my husband comes home from Iraq we are going

to

> try to take a trip to Disney World for my oldest ( 5 ) If we do be

> great to get info from you

>

> Ashauna

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Dear n and All,

The US Embassy in UAE thought that we will not return back once we

enter. To our surprise (and disappointment) they rejected our visa

request. Moreover, In spite of a letter from Honeywell Phoenix,

they cancelled my 10 year multi-entry visa. Actually, we had

learned already about this situation. And also did a lot of

preparation. The Middle East seems to be a black listed region as

far as US is concerned. The American Embassy in UAE is now richer by

USD 400 (as visa fees), thanks to us!

Naturaly, all our plans including our meeting with Dr Peggy Radford

at PCH and a visit to Disneylad are suspended (I can not think of a

better word) for indefinate period of time. But still we are not

down and out and getting back to normal life. I have promised

Sharada to take her to Euro Disney next season.

I must thank you all for lot of responses. In US we decided to buy

lot of medicines which are not available here. Especially, I want to

buy ADEKs as we have finished the stock. Please contact me if you

can help us in this matter.

I want to end my " sour news " letter with a good note. Sharada is

doing very fine (touch wood) and enjoying her vacation. Getting up

late, playing whole day, and occassionally giving a tough time to

her mama. We are happy about her.

Love to all

Shrikant

Father of Sharada 6 yr3mo wcf

> Shrikant! Good luck tomorrow! Try to look very British and sweet!

> Love to you all,

> n Rojas

>

>

>

[Guest guest]

I can send to you , but will they also charge you another charge , even

though we have to charge shipping .....It seems this is double charging

you all. Is there any way else you can get them.

Do you have a AXCAN dipharm Co there. They do sell in Europe & south

Amer., etc. Check with your area directories. It might be just AXCAN

over there. They are the company here we get from. We ship all over the

world.But some places really hit the folks again.

We charge the lowest price we can for order & the shipping we have no

control over . We can FEDEX.It is the less expensive ...........Let me

know if I can help you.

LOVE & HUGS, GrandmomBEV

Beverley Donelson

CF Pharmacy, Inc.

Freedom Pharmacy

International Pharmacy

Re: Sharada visiting Phoenix AZ

Dear n and All,

The US Embassy in UAE thought that we will not return back once we

enter. To our surprise (and disappointment) they rejected our visa

request. Moreover, In spite of a letter from Honeywell Phoenix,

they cancelled my 10 year multi-entry visa. Actually, we had

learned already about this situation. And also did a lot of

preparation. The Middle East seems to be a black listed region as

far as US is concerned. The American Embassy in UAE is now richer by

USD 400 (as visa fees), thanks to us!

Naturaly, all our plans including our meeting with Dr Peggy Radford

at PCH and a visit to Disneylad are suspended (I can not think of a

better word) for indefinate period of time. But still we are not

down and out and getting back to normal life. I have promised

Sharada to take her to Euro Disney next season.

I must thank you all for lot of responses. In US we decided to buy

lot of medicines which are not available here. Especially, I want to

buy ADEKs as we have finished the stock. Please contact me if you

can help us in this matter.

I want to end my " sour news " letter with a good note. Sharada is

doing very fine (touch wood) and enjoying her vacation. Getting up

late, playing whole day, and occassionally giving a tough time to

her mama. We are happy about her.

Love to all

Shrikant

Father of Sharada 6 yr3mo wcf

> Shrikant! Good luck tomorrow! Try to look very British and sweet!

> Love to you all, n Rojas

>

>

>

[Guest guest]

Your post makes me want to cry. How awful! Why should anyone care

if you decide to stay in the USA? I wish that there was some way I

could help. Can the Cystic Fibrosis Foundation do anything to get

your family's visa approved?

Gale

> > Shrikant! Good luck tomorrow! Try to look very British and

sweet!

> > Love to you all,

> > n Rojas

> >

> >

> >

[Guest guest]

Hi,

I am glad that Sharada is doing well, though I'm sure she must be disappointed

about not getting to go to Disneyland and meet the Mouse. I am so sorry that

they did not approve your visa. I wonder if there is anything that could be

done? There are so many news organizations from the US in the area, I wonder if

one would pick your story up as a " human interest " story? Maybe the fact that

Sharada has CF and needs those meds that you had planned to purchase to be well

would spark some interest with someone from CNN or MSNBC. Just thinking out

loud........

Re: Sharada visiting Phoenix AZ

Dear n and All,

The US Embassy in UAE thought that we will not return back once we

enter. To our surprise (and disappointment) they rejected our visa

request. Moreover, In spite of a letter from Honeywell Phoenix,

they cancelled my 10 year multi-entry visa. Actually, we had

learned already about this situation. And also did a lot of

preparation. The Middle East seems to be a black listed region as

far as US is concerned. The American Embassy in UAE is now richer by

USD 400 (as visa fees), thanks to us!

Naturaly, all our plans including our meeting with Dr Peggy Radford

at PCH and a visit to Disneylad are suspended (I can not think of a

better word) for indefinate period of time. But still we are not

down and out and getting back to normal life. I have promised

Sharada to take her to Euro Disney next season.

I must thank you all for lot of responses. In US we decided to buy

lot of medicines which are not available here. Especially, I want to

buy ADEKs as we have finished the stock. Please contact me if you

can help us in this matter.

I want to end my " sour news " letter with a good note. Sharada is

doing very fine (touch wood) and enjoying her vacation. Getting up

late, playing whole day, and occassionally giving a tough time to

her mama. We are happy about her.

Love to all

Shrikant

Father of Sharada 6 yr3mo wcf

> Shrikant! Good luck tomorrow! Try to look very British and sweet!

> Love to you all,

> n Rojas

>

>

>

[Guest guest]

,

Thanks for your reply. We are slowly accepting the fact thet our US

trip is cancelled. Your suggestin is good and I did not think of

contacting CNN. Maybe it would change US view of common people

working in Middle East. I hope the world to become a much better

place soon.

Shrikant

Father of Sharada 6 yowcf

An Indian working in Middle East

> > Shrikant! Good luck tomorrow! Try to look very British and

sweet!

> > Love to you all,

> > n Rojas

> >

> >

> >