Please say a prayer for Cindy Mustafa

[Guest guest]

If everyone could please say a prayer today for Mustafa that

she is not diagnosed with leukemia which is what her doctors now

suspect. Please let them say it's not that and that it's something

else!! This is the reason she's been MIA since her last message here

and I know she really wants to be here to help everyone. She's spent

all her life helping others and asking for nothing in return.

And again not that this is linked but speaking of the immune system:

I shared with an alternative cancer treatment center/ITL Cancer

Clinic in the Bahamas that based on helping the immune system and run by

medical doctors and PhDs. I personally know two people who are

walking testimonies as both have amazing stories where no other they

were told there were no other treatments for them and they were both

given short time left - both are still alive years later. One is

Diane's sister (email below and actually I know Diane well not her

sister -but still) and one was a speaker I met while we were both

presenting at FAU about a year ago. This clinic coordinates with the

patient's traditional MDs. The maintenance in the two people I know

is that they have to give themselves these shots every day -this is

the website which I shared with to share with her oncologist

and am sharing with all of you.

http://www.immunemedicine.com/

This is the email about the ITL Cancer Clinic from someone I know

from Florida:

> Hi all - just a note to let everyone know that there is hope - even

when western medicine says there is not. My sister has been battling

ovarian cancer for 2 years. I have a Ph.D. in gerontology and spent

the last 2 years researching for her. She was one of the first to

receive IAP and her oncologist did not even give me this option

because the hospital had not received the needed info to do it. Then

he tried to change the protocol but I found out he had changed the

dosage and time intervals to meet the schedule of the nurses. Sadly

her cancer came back after 8 months, she had more surgery and more

and different chemo. She was not doing well. She could not eat,

drink or go to the bathroom for several months - she was in the

hospital more than not - I continued my research to find more hope.

I was thinking about several clinics in Mexico with juicing and

coffee enemas etc. but my gut said she needed more. I found this

clinic with scientific and medical research behind all their work.

In 2 days we faxed her papers, talked to the doctors and they thought

they could help her. We spent 8 weeks at the clinic. She is now

home working and she just had a CA125 blood test and a cat scan and

they were both clean. Here is the website

http://www.immunemedicine.com/

> Stay hopeful and keep looking for answers - they are out there.

> Dr, Dianne (deleted) Ph.D.

For those that don't know -below are a few emails both from her

and about her:

~~~~~~~~~~~~~~~~~

Good to hear from you!

Hey , it's so very good to hear from you!! Of course I'll call,

we do have

much to catch up on! It's been a while since I've visited with the

group. I'm so

amazed there are now 7265 members!! Going down memory lane with you,

I'm in

tears looking back on the years of this group and where we began. It's

immeasurable the dreams we had shared together for our sons and all

the lovely

children of this group. Today I'm so delighted to hear about Tanner

and all

these kid's successes that keep on unfolding is so very exciting!

Tina thanks so much for your outreach here. We appreciate that you

have passed

our archived messages on to the group to help others. Khalid and I

are pleased

to have shared our journey with apraxia and do want to continue to

share. As

well it's wonderful to hear from old timers and always thrilled to

hear about

your kiddos. I have passed your messages on to Khalid.

Like college/working students his time is tight these days. Speaking

of busy,

this evening he's out with his girlfriend and a group of

friends...having dinner

at the top of Sandia Tram. They are trying to catch the last days of

summer

break before the University fall classes begin. Khalid will enjoy

your messages

and will reply in his free time!

as requested, Khalid says he will update the talking page and

arrange that

with Bilker. Tell Tanner that Khalid will be giving him a call

soon to

check out the latest. We will be in touch.

Mustafa

Mom to Khalid 20, Jadd 13, Danya 15

Re: Apraxia thru whole body?

is that YOU?!!!! I thought you fell off the face of the Earth

(or were on vacation for the summer) For those who don't know who

is -she is the heart and soul of this group -and her apraxic

son Khalid who's story is featured in The Late Talker book has always

been my inspiration for my apraxic son Tanner. (being I've " watched "

him grow up with apraxia and he's about 10 years older than Tanner -

well as well as you can watch someone from NJ or Florida that lives

in New Mexico or Oregon!)

Khalid's now a young adult and doing just amazing!!!! )

Here's Khalid's and 's trip to NY for Inside Edition years ago

http://www.cherab.org/news/insideedition.html

And from the trip to Mars:

http://www.cherab.org/information/phototrip2000.html

(Khalid's around 13, Tanner's around 4 1/2 in these photos)

And here's Khalid's story from years ago

http://www.cherab.org/information/familiesrelate/success.html

And here he is 7 years ago from the Talking Page

http://www.debtsmart.net/talk/kal.html

( you should see if Khalid can update that)

And if you check the archives -there is a huge amount of responses

from Khalid as well as . call me tomorrow -can't wait to

catch up with you!!

" If you have built castles in the air, your work need not be lost;

that is where

they should be.

Now put foundations under them. "

~Henry Thoreau

=====

[Guest guest]

Hi all,

Jeanne here. I am one of the moderators of the group and know

quite well. Many years ago when

[Guest guest]

,

If the Bahamas is too far I do know 's Develepmental

Intervention Specialist mentioned her dad, who had, I think, liver

cancer and was given 5 years to live went on for 16 years (dying at age

77) after treating with a similar type of regimen at the Atkins clinic

in NY.

Prayers for from us for sure. Thanks also for sharing this Bahama

info. Perhaps it is another way 's story may touch and help others.

L

[Guest guest]

absolutely! I will pray everyday! Charlotte

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

> >

>

,

My prayers are with you and your family at this time. Stay strong and

don't let the doctors control your destiny. I know the effects of

being told you have cancer. You initially are in shock and disbelief.

.. . there is hope and a treatment for your condition. You need to

find the right professionals to take care of you just like you did for

your children.

Cancer Treatment Centers of America use many tools to help you fight

leukemia on all fronts. A powerful combination of traditional and new,

innovative therapies are provided by cancer experts who work with you

to determine the appropriate combination of therapies.

You are a fighter, through and through. Stay strong.

all my best,

Joanne mulholland

Triple Negative Breast Cancer Patient diagnosed on 2/11/08

Stage 3, Grade 3, 7 positive nodes

Tram Flap surgery, chemo, radiation therapy

Treated at Columbia Presbyterian Hospital, NYC

[Guest guest]

My prayers are with and family and you Joanne. Keep fighting the

good fight. There is nothing a mother warrior cannot overcome.

[Guest guest]

We are originally from India. We just had a good family friend of ours who just

went through a procedure and he is recovered completely. He was telling us that

these treatments are getting very popular back home and are also affordable. If

you would be interested I would be more than happy to give you his contact

information to see if you could get additional information.

 

thanks

sheela

From: stehn4@... <stehn4@...>

Subject: Re: [ ] Re: Please say a prayer for Mustafa

Date: Saturday, July 19, 2008, 2:22 AM

absolutely! I will pray everyday! Charlotte

************ **Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse .com/fantasyaffa ir?ncid=aolspr00 050000000020)

[Guest guest]

We pray for .

May all being be healthy & Happy.

Tsering Samdup

--- ilizzy03 <lizlaw@...> wrote:

> ,

>

> If the Bahamas is too far I do know 's

> Develepmental

> Intervention Specialist mentioned her dad, who had,

> I think, liver

> cancer and was given 5 years to live went on for 16

> years (dying at age

> 77) after treating with a similar type of regimen at

> the Atkins clinic

> in NY.

>

> Prayers for from us for sure. Thanks also for

> sharing this Bahama

> info. Perhaps it is another way 's story may

> touch and help others.

>

> L

>

>

>

>

>

[Guest guest]

Oh no! I was hoping that this wouldn't be the case--

I'm praying for and her family

Becky

In a message dated 7/26/2008 12:00:05 A.M. Eastern Daylight Time,

kiddietalk@... writes:

I have an update on Mustafa. Her bone marrow results showed

that she does have leukemia and it was deep in the bone. The good

news is that it's not acute but chronic and they have already started

her on Gleevec which her doctors have put much faith in. I just was

reading this about it:

" Gleevec is a biological agent that binds to and slows or stops the

uncontrolled growth of cancer cells with the Philadelphia chromosome

genetic mutation. Although Gleevec produces sustained anticancer

responses in a significant portion of patients with Ph-positive CML,

some patients never respond to Gleevec. Researchers have been

exploring potential molecular markers or genetic mutations that may

provide insight into why some patients do not respond to Gleevec

while others experience significant and long-term responses. "

_http://patient.http://patient.http://patient.http://pathttp://patient.http:_

(http://patient.cancerconsultants.com/CancerNews_Leukemia.aspx?DocumentId=4225

1)

said that she could use any prayers anyone wants to send her

way right now as she and Mousa has just found out the diagnosis and when I

spoke to her earlier they had only told Khalid which was of course

very difficult and still had to tell their other two children.

(some of their story here

_http://cherab.http://cherab.<Whttp://cherab.http://chera_

(http://cherab.org/information/familiesrelate/success.html) )

If anyone would like to send a card to here's her address

Mustafa

8732 Eagle Springs Dr. NE

Albuquerque New Mexico 87113

's email is _4worldpeace@4worldpeace_ (mailto:4worldpeace@...)

which if you know is

just so . Such a bright and wonderful person who always brings

warmth and kindness where ever she is.

we love you! I pray you can fight this and kick it into

remission where it belongs!

For the new people that don't know who is she is Khalid's

mom. Khalid grew up with apraxia and is now in college and is an

inspiration to many of us. and her family shared Khalid's

story and some tips to help in The Late Talker book. Khalid has

shared here from time to time and like he has reached out to

help others here.

has gone to the ends of the Earth to reach out to help...in

fact and Khalid traveled to Qatar to represent CHERAB for the

First Annual International Forum on Children with Special Needs,

hosted by the Shafallah Center and the King and Queen of Qatar, and

in association with Newsweek magazine in Doha, Qatar, May 8-9,

2006. One of the key note speakers was Cherie Blair

_http://www.shafallahttp://ww_ (http://www.shafallah.org.qa/) I'm so happy

the two of them had that

time to outreach through CHERAB and raise awareness about speech

impairments like apraxia while they were treated like (as she said)

royalty in luxury on an exclusive island all generously paid for by

the Shafallah Center and the King and Queen as invited

representatives from CHERAB.

Here's some photos of and Khalid when they flew into NY when we

were filmed for Inside Edition for a segment on apraxia

_http://www.cherab.http://www.cherahttp://www.chehttp_

(http://www.cherab.org/information/phototrip2000.html)

Here's an email from from Khalid

FW: Experiences that work together

Khalid has requested that I forward this message for him. His message did not

show up the other day. Must be again.

mom to Khalid

------------------------<WBR>-- Forwarded Mess--

From: _khalid236@..._ (mailto:khalid236@...)

_khalidsvision@khalidsvi_ (mailto:khalidsvision@...)

Subject: Experiences that work together

Monday, July 17, 2006 1:38:58 PM

Hi Dawn my answers are taken from my own experiences. My mom

is usually the one that responds to parent's questions on the net

and she understands more about the mechanics of speech. Don't want

to confuse anyone but will try my best to explain what I know in

therapies.

I do take fish oil on and off and was more consistent in my

junior years. The standard of fish oil was not popular when I was a

boy so the main course of therapy was oral motor. Fish oil is a good

thing for everyone to stay on.

I think the best approach to therapy is having that solid

relationship with the therapist and support system. Parents and

therapist working together with your child is the way to go. I don't

remember much with group setting. Constant one on one is what worked

best for me. There are therapists where I had no connection making

therapy a routine task. my school therapist stood out from the

rest. I feel lucky that he was frank but sincere. His honesty gave

direct answers dealing with apraxia. I use to talk like a robot and

was told straight that I did. My voice was monotone and I realized I

needed rhythm and patterns to sound natural. I responded well to

's candor. I needed to hear the hard stuff that came with

apraxia and how I can get the better edge.

Told that the traditional articulation therapy alone was not

useful in younger years. My progress was so slow up to the point

that I met . That is what decided there's more going on with my

speech problems that led to my diagnosis at age 8. Then basic

apraxia techniques were used, like cued speech, oral motor and

sensory exercises, drills and repetition in sounds. The voice tape

recordings reviewed my speech and I knew what was happening as I

advanced in speech.

I also had my personal touch thats sucking on things like

candies, ice or through a straw in a thick shake or smoothie. I

can't say exactly why a strong suction worked but I think this

helped positioned my mouth for clarity. Speech strategies is a great

tip, like using abbreviated words helped me out in conversations.

Therapy was often used in activities. To make it interesting we

played games for therapeutic purposes. Basketball was a cool way to

motivate sounds and help with coordination. Learning the techniques

of basketball was not easy for my hands and a body that did not want

to cooperate. It was like learning to talk, there was lots of

repetition and drills to practice to get the skill down. It was work

but I came a way from therapy feeling accomplished. Thanks to

I had mastered words, confidence and a game that became my passion.

Another helpful approach are therapies outside of school. My

parent's method was used in ways that were not obvious to me. I did

not think of this as speech homework. What was put in practice was

part of our daily lives. My family and I spent loads of time at

parks, and places that had play climbing structures. It worked those

muscles for speech and coordination. I saw messages that parents are

doing this approach with their kids at amusement parks. Riding

therapy and how this stimulates speech like Tanner is something what

I'm talking about. Tanner and I had a conversation just the other

day and he sounds fantastic. I'll be having some ride therapy of

my own at Six Flags and canoeing in Colorado with 3 of my friends.

Tanner I'll let you know when I'm back how the ride therapy went

for me!

Nearly 20 and have to say its evident the changes in apraxia.

I'm comfortable with my speech. From time to time I slip-up on a

word, and know this can happen to everyone. To prevent bloopers I

still practice multifaceted words, specially for school

presentations. My written language has improved, but for papers I

use spell check to catch some errors or typos, this is handy.

Appreciate the luck this coming school year. College life is

good so far and I'm staying on course. I wish good fortune to

your daughter and all the kids in this group. Don't question hope

its always there when people are on your side. Keep up the faith and

the praise coming, your kids believe in you.

Take care, Khalid

~~~~~~~~~~~~~~~~~~~~~~~~<WB

Wise words Khalid -thank you.

" Don't question hope its always there when people are on your side "

Please pray for and her family.

=====

Geng

President CHERAB Foundation

Communication Help, Education, Research, Apraxia Base

_http://www.cherab.htt_ (http://www.cherab.org/)

Co Founder Speechville

772-335-5135

" Help give our cherubs a smile and a voice "

>

> If everyone could please say a prayer today for Mustafa that

> she is not diagnosed with leukemia which is what her doctors now

> suspect. Please let them say it's not that and that it's something

> else!! This is the reason she's been MIA since her last message

here

> and I know she really wants to be here to help everyone. She's

spent

> all her life helping others and asking for nothing in return.

>

> And again not that this is linked but speaking of the immune system:

>

> I shared with an alternative cancer treatment center/ITL

Cancer

> Clinic in the Bahamas that based on helping the immune system and

run by

> medical doctors and PhDs. I personally know two people who are

> walking testimonies as both have amazing stories where no other they

> were told there were no other treatments for them and they were both

> given short time left - both are still alive years later. One is

> Diane's sister (email below and actually I know Diane well not her

> sister -but still) and one was a speaker I met while we were both

> presenting at FAU about a year ago. This clinic coordinates with

the

> patient's traditional MDs. The maintenance in the two people I know

> is that they have to give themselves these shots every day -this is

> the website which I shared with to share with her oncologist

> and am sharing with all of you.

> _http://www.immunemehttp://www._ (http://www.immunemedicine.com/)

>

> This is the email about the ITL Cancer Clinic from someone I know

> from Florida:

>

> > Hi all - just a note to let everyone know that there is hope -

even

> when western medicine says there is not. My sister has been battling

> ovarian cancer for 2 years. I have a Ph.D. in gerontology and spent

> the last 2 years researching for her. She was one of the first to

> receive IAP and her oncologist did not even give me this option

> because the hospital had not received the needed info to do it. Then

> he tried to change the protocol but I found out he had changed the

> dosage and time intervals to meet the schedule of the nurses. Sadly

> her cancer came back after 8 months, she had more surgery and more

> and different chemo. She was not doing well. She could not eat,

> drink or go to the bathroom for several months - she was in the

> hospital more than not - I continued my research to find more hope.

> I was thinking about several clinics in Mexico with juicing and

> coffee enemas etc. but my gut said she needed more. I found this

> clinic with scientific and medical research behind all their work.

> In 2 days we faxed her papers, talked to the doctors and they

thought

> they could help her. We spent 8 weeks at the clinic. She is now

> home working and she just had a CA125 blood test and a cat scan and

> they were both clean. Here is the website

> _http://www.immunemehttp://www._ (http://www.immunemedicine.com/)

> > Stay hopeful and keep looking for answers - they are out there.

> > Dr, Dianne (deleted) Ph.D.

>

> For those that don't know -below are a few emails both from

her

> and about her:

> ~~~~~~~~~~~~

>

> Good to hear from you!

>

>

> Hey , it's so very good to hear from you!! Of course I'll call,

> we do have

> much to catch up on! It's been a while since I've visited with the

> group. I'm so

> amazed there are now 7265 members!! Going down memory lane with you,

> I'm in

> tears looking back on the years of this group and where we began.

It's

> immeasurable the dreams we had shared together for our sons and all

> the lovely

> children of this group. Today I'm so delighted to hear about Tanner

> and all

> these kid's successes that keep on unfolding is so very exciting!

>

> Tina thanks so much for your outreach here. We appreciate that you

> have passed

> our archived messages on to the group to help others. Khalid and I

> are pleased

> to have shared our journey with apraxia and do want to continue to

> share. As

> well it's wonderful to hear from old timers and always thrilled to

> hear about

> your kiddos. I have passed your messages on to Khalid.

>

> Like college/working students his time is tight these days. Speaking

> of busy,

> this evening he's out with his girlfriend and a group of

> friends...having dinner

> at the top of Sandia Tram. They are trying to catch the last days of

> summer

> break before the University fall classes begin. Khalid will enjoy

> your messages

> and will reply in his free time!

>

> as requested, Khalid says he will update the talking page and

> arrange that

> with Bilker. Tell Tanner that Khalid will be giving him a call

> soon to

> check out the latest. We will be in touch.

>

>

> Mustafa

> Mom to Khalid 20, Jadd 13, Danya 15

>

> Re: Apraxia thru whole body?

>

>

> is that YOU?!!!! I thought you fell off the face of the Earth

> (or were on vacation for the summer) For those who don't know who

> is -she is the heart and soul of this group -and her apraxic

> son Khalid who's story is featured in The Late Talker book has

always

> been my inspiration for my apraxic son Tanner. (being I've " watched "

> him grow up with apraxia and he's about 10 years older than Tanner -

> well as well as you can watch someone from NJ or Florida that lives

> in New Mexico or Oregon!)

>

> Khalid's now a young adult and doing just amazing!!!! )

>

> Here's Khalid's and 's trip to NY for Inside Edition years ago

> _http://www.cherab.http://wwhttp://www.chehttp_

(http://www.cherab.org/news/insideedition.html)

>

> And from the trip to Mars:

> _http://www.cherab.http://www.cherahttp://www.chehttp_

(http://www.cherab.org/information/phototrip2000.html)

> (Khalid's around 13, Tanner's around 4 1/2 in these photos)

>

> And here's Khalid's story from years ago

> _http://www.cherab.http://www.cherahttp://www.cherhttp://www.c_

(http://www.cherab.org/information/familiesrelate/success.html)

>

> And here he is 7 years ago from the Talking Page

> _http://www.debtsmarhttp://www.http://w_

(http://www.debtsmart.net/talk/kal.html)

>

> ( you should see if Khalid can update that)

>

> And if you check the archives -there is a huge amount of responses

> from Khalid as well as . call me tomorrow -can't wait to

> catch up with you!!

>

> " If you have built castles in the air, your work need not be lost;

> that is where

> they should be.

> Now put foundations under them. "

> ~Henry Thoreau

>

> =====

>

[Guest guest]

I have an update on Mustafa. Her bone marrow results showed

that she does have leukemia and it was deep in the bone. The good

news is that it's not acute but chronic and they have already started

her on Gleevec which her doctors have put much faith in. I just was

reading this about it:

" Gleevec is a biological agent that binds to and slows or stops the

uncontrolled growth of cancer cells with the Philadelphia chromosome

genetic mutation. Although Gleevec produces sustained anticancer

responses in a significant portion of patients with Ph-positive CML,

some patients never respond to Gleevec. Researchers have been

exploring potential molecular markers or genetic mutations that may

provide insight into why some patients do not respond to Gleevec

while others experience significant and long-term responses. "

http://patient.cancerconsultants.com/CancerNews_Leukemia.aspx?DocumentId=42251

said that she could use any prayers anyone wants to send her

way right now as she and Mousa has just found out the diagnosis and when I

spoke to her earlier they had only told Khalid which was of course

very difficult and still had to tell their other two children.

(some of their story here

http://cherab.org/information/familiesrelate/success.html )

If anyone would like to send a card to here's her address

Mustafa

8732 Eagle Springs Dr. NE

Albuquerque New Mexico 87113

's email is 4worldpeace@... which if you know is

just so . Such a bright and wonderful person who always brings

warmth and kindness where ever she is.

we love you! I pray you can fight this and kick it into

remission where it belongs!

For the new people that don't know who is she is Khalid's

mom. Khalid grew up with apraxia and is now in college and is an

inspiration to many of us. and her family shared Khalid's

story and some tips to help in The Late Talker book. Khalid has

shared here from time to time and like he has reached out to

help others here.

has gone to the ends of the Earth to reach out to help...in

fact and Khalid traveled to Qatar to represent CHERAB for the

First Annual International Forum on Children with Special Needs,

hosted by the Shafallah Center and the King and Queen of Qatar, and

in association with Newsweek magazine in Doha, Qatar, May 8-9,

2006. One of the key note speakers was Cherie Blair

http://www.shafallah.org.qa/ I'm so happy the two of them had that

time to outreach through CHERAB and raise awareness about speech

impairments like apraxia while they were treated like (as she said)

royalty in luxury on an exclusive island all generously paid for by

the Shafallah Center and the King and Queen as invited

representatives from CHERAB.

Here's some photos of and Khalid when they flew into NY when we

were filmed for Inside Edition for a segment on apraxia

http://www.cherab.org/information/phototrip2000.html

Here's an email from from Khalid

FW: Experiences that work together

Khalid has requested that I forward this message for him. His message did not

show up the other day. Must be again.

mom to Khalid

-------------- Forwarded Message: --------------

From: khalid236@...

khalidsvision@...

Subject: Experiences that work together

Monday, July 17, 2006 1:38:58 PM

Hi Dawn my answers are taken from my own experiences. My mom

is usually the one that responds to parent's questions on the net

and she understands more about the mechanics of speech. Don't want

to confuse anyone but will try my best to explain what I know in

therapies.

I do take fish oil on and off and was more consistent in my

junior years. The standard of fish oil was not popular when I was a

boy so the main course of therapy was oral motor. Fish oil is a good

thing for everyone to stay on.

I think the best approach to therapy is having that solid

relationship with the therapist and support system. Parents and

therapist working together with your child is the way to go. I don't

remember much with group setting. Constant one on one is what worked

best for me. There are therapists where I had no connection making

therapy a routine task. my school therapist stood out from the

rest. I feel lucky that he was frank but sincere. His honesty gave

direct answers dealing with apraxia. I use to talk like a robot and

was told straight that I did. My voice was monotone and I realized I

needed rhythm and patterns to sound natural. I responded well to

's candor. I needed to hear the hard stuff that came with

apraxia and how I can get the better edge.

Told that the traditional articulation therapy alone was not

useful in younger years. My progress was so slow up to the point

that I met . That is what decided there's more going on with my

speech problems that led to my diagnosis at age 8. Then basic

apraxia techniques were used, like cued speech, oral motor and

sensory exercises, drills and repetition in sounds. The voice tape

recordings reviewed my speech and I knew what was happening as I

advanced in speech.

I also had my personal touch thats sucking on things like

candies, ice or through a straw in a thick shake or smoothie. I

can't say exactly why a strong suction worked but I think this

helped positioned my mouth for clarity. Speech strategies is a great

tip, like using abbreviated words helped me out in conversations.

Therapy was often used in activities. To make it interesting we

played games for therapeutic purposes. Basketball was a cool way to

motivate sounds and help with coordination. Learning the techniques

of basketball was not easy for my hands and a body that did not want

to cooperate. It was like learning to talk, there was lots of

repetition and drills to practice to get the skill down. It was work

but I came a way from therapy feeling accomplished. Thanks to

I had mastered words, confidence and a game that became my passion.

Another helpful approach are therapies outside of school. My

parent's method was used in ways that were not obvious to me. I did

not think of this as speech homework. What was put in practice was

part of our daily lives. My family and I spent loads of time at

parks, and places that had play climbing structures. It worked those

muscles for speech and coordination. I saw messages that parents are

doing this approach with their kids at amusement parks. Riding

therapy and how this stimulates speech like Tanner is something what

I'm talking about. Tanner and I had a conversation just the other

day and he sounds fantastic. I'll be having some ride therapy of

my own at Six Flags and canoeing in Colorado with 3 of my friends.

Tanner I'll let you know when I'm back how the ride therapy went

for me!

Nearly 20 and have to say its evident the changes in apraxia.

I'm comfortable with my speech. From time to time I slip-up on a

word, and know this can happen to everyone. To prevent bloopers I

still practice multifaceted words, specially for school

presentations. My written language has improved, but for papers I

use spell check to catch some errors or typos, this is handy.

Appreciate the luck this coming school year. College life is

good so far and I'm staying on course. I wish good fortune to

your daughter and all the kids in this group. Don't question hope

its always there when people are on your side. Keep up the faith and

the praise coming, your kids believe in you.

Take care, Khalid

~~~~~~~~~~~~~end of archive

Wise words Khalid -thank you.

" Don't question hope its always there when people are on your side "

Please pray for and her family.

=====

[Guest guest]

,

Thank you for the update on and for the link to inside edition

pictures, when they visited NYC. remember one thing you are in

control of your body and mind not the cancer. Always think posititve

and tell yourself no matter what it (cancer) doesn't belong in you,

use your positive energy inside to get rid of it. My sister does yoga

and meditates alot that helped her get thru it all. Jeanne

>

> I have an update on Mustafa. Her bone marrow results showed

> that she does have leukemia and it was deep in the bone. The good

> news is that it's not acute but chronic and they have already

started

> her on Gleevec which her doctors have put much faith in. I just

was

> reading this about it:

>

> " Gleevec is a biological agent that binds to and slows or stops the

> uncontrolled growth of cancer cells with the Philadelphia chromosome

> genetic mutation. Although Gleevec produces sustained anticancer

> responses in a significant portion of patients with Ph-positive CML,

> some patients never respond to Gleevec. Researchers have been

> exploring potential molecular markers or genetic mutations that may

> provide insight into why some patients do not respond to Gleevec

> while others experience significant and long-term responses. "

> http://patient.cancerconsultants.com/CancerNews_Leukemia.aspx?

DocumentId=42251

>

> said that she could use any prayers anyone wants to send her

> way right now as she and Mousa has just found out the diagnosis and

when I

> spoke to her earlier they had only told Khalid which was of course

> very difficult and still had to tell their other two children.

> (some of their story here

http://cherab.org/information/familiesrelate/success.html )

>

> If anyone would like to send a card to here's her address

>

> Mustafa

> 8732 Eagle Springs Dr. NE

> Albuquerque New Mexico 87113

>

> 's email is 4worldpeace@... which if you know is

> just so . Such a bright and wonderful person who always brings

> warmth and kindness where ever she is.

>

> we love you! I pray you can fight this and kick it into

> remission where it belongs!

>

> For the new people that don't know who is she is Khalid's

> mom. Khalid grew up with apraxia and is now in college and is an

> inspiration to many of us. and her family shared Khalid's

> story and some tips to help in The Late Talker book. Khalid has

> shared here from time to time and like he has reached out to

> help others here.

>

> has gone to the ends of the Earth to reach out to help...in

> fact and Khalid traveled to Qatar to represent CHERAB for the

> First Annual International Forum on Children with Special Needs,

> hosted by the Shafallah Center and the King and Queen of Qatar, and

> in association with Newsweek magazine in Doha, Qatar, May 8-9,

> 2006. One of the key note speakers was Cherie Blair

> http://www.shafallah.org.qa/ I'm so happy the two of them had that

> time to outreach through CHERAB and raise awareness about speech

> impairments like apraxia while they were treated like (as she said)

> royalty in luxury on an exclusive island all generously paid for by

> the Shafallah Center and the King and Queen as invited

> representatives from CHERAB.

>

> Here's some photos of and Khalid when they flew into NY when

we

> were filmed for Inside Edition for a segment on apraxia

> http://www.cherab.org/information/phototrip2000.html

>

> Here's an email from from Khalid

>

> FW: Experiences that work together

>

>

> Khalid has requested that I forward this message for him. His

message did not

> show up the other day. Must be again.

>

> mom to Khalid

>

> -------------- Forwarded Message: --------------

> From: khalid236@...

> khalidsvision@...

> Subject: Experiences that work together

> Monday, July 17, 2006 1:38:58 PM

>

>

> Hi Dawn my answers are taken from my own experiences. My mom

> is usually the one that responds to parent's questions on the net

> and she understands more about the mechanics of speech. Don't want

> to confuse anyone but will try my best to explain what I know in

> therapies.

> I do take fish oil on and off and was more consistent in my

> junior years. The standard of fish oil was not popular when I was a

> boy so the main course of therapy was oral motor. Fish oil is a good

> thing for everyone to stay on.

> I think the best approach to therapy is having that solid

> relationship with the therapist and support system. Parents and

> therapist working together with your child is the way to go. I don't

> remember much with group setting. Constant one on one is what worked

> best for me. There are therapists where I had no connection making

> therapy a routine task. my school therapist stood out from the

> rest. I feel lucky that he was frank but sincere. His honesty gave

> direct answers dealing with apraxia. I use to talk like a robot and

> was told straight that I did. My voice was monotone and I realized I

> needed rhythm and patterns to sound natural. I responded well to

> 's candor. I needed to hear the hard stuff that came with

> apraxia and how I can get the better edge.

> Told that the traditional articulation therapy alone was not

> useful in younger years. My progress was so slow up to the point

> that I met . That is what decided there's more going on with my

> speech problems that led to my diagnosis at age 8. Then basic

> apraxia techniques were used, like cued speech, oral motor and

> sensory exercises, drills and repetition in sounds. The voice tape

> recordings reviewed my speech and I knew what was happening as I

> advanced in speech.

> I also had my personal touch thats sucking on things like

> candies, ice or through a straw in a thick shake or smoothie. I

> can't say exactly why a strong suction worked but I think this

> helped positioned my mouth for clarity. Speech strategies is a great

> tip, like using abbreviated words helped me out in conversations.

> Therapy was often used in activities. To make it interesting we

> played games for therapeutic purposes. Basketball was a cool way to

> motivate sounds and help with coordination. Learning the techniques

> of basketball was not easy for my hands and a body that did not want

> to cooperate. It was like learning to talk, there was lots of

> repetition and drills to practice to get the skill down. It was work

> but I came a way from therapy feeling accomplished. Thanks to

> I had mastered words, confidence and a game that became my passion.

> Another helpful approach are therapies outside of school. My

> parent's method was used in ways that were not obvious to me. I did

> not think of this as speech homework. What was put in practice was

> part of our daily lives. My family and I spent loads of time at

> parks, and places that had play climbing structures. It worked those

> muscles for speech and coordination. I saw messages that parents are

> doing this approach with their kids at amusement parks. Riding

> therapy and how this stimulates speech like Tanner is something what

> I'm talking about. Tanner and I had a conversation just the other

> day and he sounds fantastic. I'll be having some ride therapy of

> my own at Six Flags and canoeing in Colorado with 3 of my friends.

> Tanner I'll let you know when I'm back how the ride therapy went

> for me!

> Nearly 20 and have to say its evident the changes in apraxia.

> I'm comfortable with my speech. From time to time I slip-up on a

> word, and know this can happen to everyone. To prevent bloopers I

> still practice multifaceted words, specially for school

> presentations. My written language has improved, but for papers I

> use spell check to catch some errors or typos, this is handy.

> Appreciate the luck this coming school year. College life is

> good so far and I'm staying on course. I wish good fortune to

> your daughter and all the kids in this group. Don't question hope

> its always there when people are on your side. Keep up the faith and

> the praise coming, your kids believe in you.

>

>

> Take care, Khalid

>

> ~~~~~~~~~~~~~end of archive

>

> Wise words Khalid -thank you.

>

> " Don't question hope its always there when people are on your side "

>

> Please pray for and her family.

>

>

> =====

>

[Guest guest]

So sorry to hear this !

There's a lot of hope though. treatments have been getting better and

better--but as with everything, research and thorough understanding is

recommended. Standard treatments do not work for all and just because they've

become standard doesn't mean they produce the best results, just that they've

been financially supported the most and pro pulsed into medical practice with

mega bucks because they bring in even more.

 I also remember reading about some cases of leukemia having been linked to

fungus infections. When the fungicides were given, the leukemia went into

remission.  Kind of an accidental discovery but it was proven by subsequent

research. Again, not something major " clinical double blind and all that " , but

not because the research had no merit, but because that takes tons of money and

the outcome better benefit somebody financially (as in millions and billions) or

it's a lot less likely to happen.  This is the reality, this is why fish oil

will never be given a clear FDA bill as a substance that helps heal anything,

because there's no patent that can benefit anybody to the extent that other

drugs can. And even government sponsored research has a lot of strings attached,

the financial stakes are always very high with these things.

So there' some research on this but I do not have it handy.  Again, it's not

mainstream yet, but everything starts out that way there's enough linking the

two and I believe there was even some more extensive research that showed

leukemia went into remission after fungicide administration.  This doesn't apply

to all cancers of course, but there's something about leukemia that links it

with the fungi and at the very least a worse prognosis if it is not addressed

along with the leukemia.  At any rate, the role of the immune system is huge

here.

Please tell our prayers are with her and her family.

-Elena

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: Please say a prayer for Mustafa

Date: Friday, July 25, 2008, 11:50 PM

I have an update on Mustafa. Her bone marrow results showed

that she does have leukemia and it was deep in the bone. The good

news is that it's not acute but chronic and they have already started

her on Gleevec which her doctors have put much faith in. I just was

reading this about it:

" Gleevec is a biological agent that binds to and slows or stops the

uncontrolled growth of cancer cells with the Philadelphia chromosome

genetic mutation. Although Gleevec produces sustained anticancer

responses in a significant portion of patients with Ph-positive CML,

some patients never respond to Gleevec. Researchers have been

exploring potential molecular markers or genetic mutations that may

provide insight into why some patients do not respond to Gleevec

while others experience significant and long-term responses. "

http://patient.cancerconsultants.com/CancerNews_Leukemia.aspx?DocumentId=42251

said that she could use any prayers anyone wants to send her

way right now as she and Mousa has just found out the diagnosis and when I

spoke to her earlier they had only told Khalid which was of course

very difficult and still had to tell their other two children.

(some of their story here

http://cherab.org/information/familiesrelate/success.html )

If anyone would like to send a card to here's her address

Mustafa

8732 Eagle Springs Dr. NE

Albuquerque New Mexico 87113

's email is 4worldpeace@... which if you know is

just so . Such a bright and wonderful person who always brings

warmth and kindness where ever she is.

we love you! I pray you can fight this and kick it into

remission where it belongs!

For the new people that don't know who is she is Khalid's

mom. Khalid grew up with apraxia and is now in college and is an

inspiration to many of us. and her family shared Khalid's

story and some tips to help in The Late Talker book. Khalid has

shared here from time to time and like he has reached out to

help others here.

has gone to the ends of the Earth to reach out to help...in

fact and Khalid traveled to Qatar to represent CHERAB for the

First Annual International Forum on Children with Special Needs,

hosted by the Shafallah Center and the King and Queen of Qatar, and

in association with Newsweek magazine in Doha, Qatar, May 8-9,

2006. One of the key note speakers was Cherie Blair

http://www.shafallah.org.qa/ I'm so happy the two of them had that

time to outreach through CHERAB and raise awareness about speech

impairments like apraxia while they were treated like (as she said)

royalty in luxury on an exclusive island all generously paid for by

the Shafallah Center and the King and Queen as invited

representatives from CHERAB.

Here's some photos of and Khalid when they flew into NY when we

were filmed for Inside Edition for a segment on apraxia

http://www.cherab.org/information/phototrip2000.html

Here's an email from from Khalid

FW: Experiences that work together

Khalid has requested that I forward this message for him. His message did not

show up the other day. Must be again.

mom to Khalid

-------------- Forwarded Message: --------------

From: khalid236@...

khalidsvision@...

Subject: Experiences that work together

Monday, July 17, 2006 1:38:58 PM

Hi Dawn my answers are taken from my own experiences. My mom

is usually the one that responds to parent's questions on the net

and she understands more about the mechanics of speech. Don't want

to confuse anyone but will try my best to explain what I know in

therapies.

I do take fish oil on and off and was more consistent in my

junior years. The standard of fish oil was not popular when I was a

boy so the main course of therapy was oral motor. Fish oil is a good

thing for everyone to stay on.

I think the best approach to therapy is having that solid

relationship with the therapist and support system. Parents and

therapist working together with your child is the way to go. I don't

remember much with group setting. Constant one on one is what worked

best for me. There are therapists where I had no connection making

therapy a routine task. my school therapist stood out from the

rest. I feel lucky that he was frank but sincere. His honesty gave

direct answers dealing with apraxia. I use to talk like a robot and

was told straight that I did. My voice was monotone and I realized I

needed rhythm and patterns to sound natural. I responded well to

's candor. I needed to hear the hard stuff that came with

apraxia and how I can get the better edge.

Told that the traditional articulation therapy alone was not

useful in younger years. My progress was so slow up to the point

that I met . That is what decided there's more going on with my

speech problems that led to my diagnosis at age 8. Then basic

apraxia techniques were used, like cued speech, oral motor and

sensory exercises, drills and repetition in sounds. The voice tape

recordings reviewed my speech and I knew what was happening as I

advanced in speech.

I also had my personal touch thats sucking on things like

candies, ice or through a straw in a thick shake or smoothie. I

can't say exactly why a strong suction worked but I think this

helped positioned my mouth for clarity. Speech strategies is a great

tip, like using abbreviated words helped me out in conversations.

Therapy was often used in activities. To make it interesting we

played games for therapeutic purposes. Basketball was a cool way to

motivate sounds and help with coordination. Learning the techniques

of basketball was not easy for my hands and a body that did not want

to cooperate. It was like learning to talk, there was lots of

repetition and drills to practice to get the skill down. It was work

but I came a way from therapy feeling accomplished. Thanks to

I had mastered words, confidence and a game that became my passion.

Another helpful approach are therapies outside of school. My

parent's method was used in ways that were not obvious to me. I did

not think of this as speech homework. What was put in practice was

part of our daily lives. My family and I spent loads of time at

parks, and places that had play climbing structures. It worked those

muscles for speech and coordination. I saw messages that parents are

doing this approach with their kids at amusement parks. Riding

therapy and how this stimulates speech like Tanner is something what

I'm talking about. Tanner and I had a conversation just the other

day and he sounds fantastic. I'll be having some ride therapy of

my own at Six Flags and canoeing in Colorado with 3 of my friends.

Tanner I'll let you know when I'm back how the ride therapy went

for me!

Nearly 20 and have to say its evident the changes in apraxia.

I'm comfortable with my speech. From time to time I slip-up on a

word, and know this can happen to everyone. To prevent bloopers I

still practice multifaceted words, specially for school

presentations. My written language has improved, but for papers I

use spell check to catch some errors or typos, this is handy.

Appreciate the luck this coming school year. College life is

good so far and I'm staying on course. I wish good fortune to

your daughter and all the kids in this group. Don't question hope

its always there when people are on your side. Keep up the faith and

the praise coming, your kids believe in you.

Take care, Khalid

~~~~~~~~~~~~~end of archive

Wise words Khalid -thank you.

" Don't question hope its always there when people are on your

side "

Please pray for and her family.

=====

[Guest guest]

I pray for and her family.