Thank You

[Guest guest]

Thanks Annie! Yes, until recent medications came along, a magic pill was but

a dream concept.

We now have a new dream concept-a magic cure-and can only pray that it will

become a reality soon.

Much love, Iris

On 2/22/07, Annie <ibannie@...> wrote:

>

> Dear Iris

> Your message brought tears to my eyes. You put it so well, it is

> definately an extra dimension and depth that these groups have given

> me too. Its my son who has cml, but I could not have stayed sane

> without everyone out there that has helped me so much.

> Yes, every story, every cyber hand that has been held out has kept

> me 'level' and therefore helped too.

>

> Cancer is in our lives, and always will be - I am just so

> tremendously fortunate to be able to say that my life, and 's,

> has actually improved dramatically since it came into our family.

>

> And yes, strength to both you and Ilana as well as bunches of

> smiles, lots of joy and a depth of happiness that comes from facing

> something like cml. I have this very clear picture of a " Cure

> Party " happening - I hold on to that firmly and just know it will

> happen! :-)

>

> Love, light and health to you both, Iris

> Annie

> 's mom

> www.livingwithcml.blogspot.com

>

> >

> > Hi to all,

> >

> > I lay awake till late last night thinking about the extra

> dimension that you> have all added to my life since joining this

> group 2 months ago when my twin> sister was diagnosed. I thought

> about how, apart from the incredible> information I am learning

> regarding the disease, treatment and> management, your stories of

> courage and survival are a true inspiration. I> am so sorry that you

> and my sister are ill and pray with all of my heart> that one of

> these days soon there will be a way to actually cure CML.

> >

> > In the mean time, I wish everyone strength, hope and light and

> thank you so> much for the privilege of your discussions. My life is

> deeper and broader> thanks to you.

> >

> > Iris Vancouver BC

> > Twin of Ilana, Johannesburg South Africa

> >

> >

> >

[Guest guest]

Dear Shirley

I am sitting here crying, over your kind message.

Thank you with all my heart, knowing peoples care, makes it so much

more easy to cope.I wish the Dr`s would know how we feel, maybe the

would be more understanding.I wonder if the really care, or if it is

just the money the are after.

Again thank you

Also gentle hugs

E,

[Guest guest]

,

You are welcome, I only pointed out the truth. Always remember, there

are people here who do understand and want the BEST in your life. You

can email me anytime if you need someone. I'll give you a boost and I

know that you will do the same for someone else that is at a low point.

I pray that today is a much better day for you and everyone in this

group.

Much love,

Shirley

>

> Dear Shirley

> I am sitting here crying, over your kind message.

> Thank you with all my heart, knowing peoples care, makes it so much

> more easy to cope.I wish the Dr`s would know how we feel, maybe the

> would be more understanding.I wonder if the really care, or if it is

> just the money the are after.

> Again thank you

> Also gentle hugs

> E,

>

[Guest guest]

Tonikka & Chris…

THAT WAS SO BEAUTIFULLY STATED…

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Tonikka & Chris

Sent: Monday, July 28, 2008 12:10

AM

blepharophimosis

Subject: blepharophimosis THANK

YOU

its so weird that all of our children are growing up.. as i have been

apart of this community for a long long time!!! my son Lynden will be 11

this year and is finally done with all of his surgeries.. finally. (i hope) lol

it seems like yesterday that he was just born and i was asked if he was burnt

in a fire or was he blind, did he have down syndrome or is he sleeping. i keep

looking at the new posts and see everyones distress when they have a new

diagnosis of BPES and think thank goodness their child only has BPES.. and now

that they are a part of our group they will be at ease eventually. i say

thank goodness as our family is lucky because we have a multitude of genetic

stuff and my husband and i were tested and we have some matches like

duchanes muscular dystrophy etc.. when we had our last daughter i

was so thankful, yes lynden has had 6-7 surgeries (can't keep count) but none

of my children have any neurological disorders.. so i am thankful lynden has

BPES because that makes him a unique individual. he gets a laugh when we get

his glasses renewed and he tells the ladies at the glasses place his

prescription and they look at him in shock.. lol wowee they will say you

have a strong prescription.. then it proceeds on us picking out glasses and me

trying to make him independent and picking his own.. however i interject

and we always get the glasses i want.. just the mom in me i guess.. he

went to camp this summer and was made fun of profusely but lynden has such a

big heart he could look past it and see the good in people, i asked him if he

wanted to go back and he said " hmm yah i guess i could " . when lynden

was born i was always worried about how he would turn out, he is so passive it

scares me, his feelings get hurt really easy so yesterday he talked back to me

for the first time all i could do was stand there with my mouth hung wide open

and then i promptly burst out laughing then into tears... " my son has a

personality " YAY!!! lol well he always did i was just worried about him

being so passive and going to junior high (grade 7-9) those are the toughest

years of a persons life, he has it rough because of his eyes and his

passiveness.. i realize i cannot protect him forever, but i sure in heck will

try.,

OH MY GOODNESS i just wrote a novel and i am soo sorry!!

my point was that i am thankful we all have these beautiful children

with BPES so unique in their own little way.

i am thankful to have physically met with some of you and to have

talked with you, i hope we can all stay apart of this community for a long time

to come and continue to welcome the new BPES children and adults and continue

putting them at ease...

thanks everyone for creating your wonderful children.. my motto is god

only gives you what you are able to handle in life...... and that is

life!!

On 22-Jul-08, at 11:16 AM, Dana wrote:

-

Thanks for your response!

I checked out your pictures and Imogen is adorable!!

Congratulations!! HOnestly, had I not seen your

childhood pictures I

would have never known by your adult pictures that you had bleph.

The doctor did amazing!! You look beautiful!!

When will your daughter have her surgery?

Dana

> >

> > Hey everyone!! It has been a long time since I have posted

anything,

> > but Brooklyn had her check up

yesterday with her dr @ U of I and

he

> > will be performing the epithcanthus later this month.

> >

> > Anyone who has experience this I would appreciate hearing from

you.

> We

> > have had the 'sling' surgery before, but not this.

> >

> > Thank you!!

> > Dana

> >

>

Tonikka

& Chris

Lynden,Hunter,Avery

[Guest guest]

What a beautiful picture! We have two daughters w/o BPES and our son Ethan has it. He has always been quite passive as well, he turned 13 this year and is getting a little "bite" to him. We are glad but get tickled because it is not his norm. I hope the year ahead in school is a good one for Lynden!

Emalee Barrow

- Thanks for your response! I checked out your pictures and Imogen is adorable!! Congratulations! ! HOnestly, had I not seen your childhood pictures I would have never known by your adult pictures that you had bleph. The doctor did amazing!! You look beautiful!!When will your daughter have her surgery? Dana > >> > Hey everyone!! It has been a long time since I have posted anything, > > but Brooklyn had her check up yesterday with her dr @ U of I and he > > will be performing the epithcanthus later this month. > > > > Anyone who has experience this I would appreciate hearing from you. > We > > have had the 'sling' surgery before, but not this. > > > > Thank you!!> > Dana> >>

Tonikka & Chris

Lynden,Hunter,Avery

[Guest guest]

Dear everyone,My name is Margot. I'm 11 years old and my mom is part of this health group. Though, I'm the one with Blepharophimosis. I don't have the mental side effect or any others, yet. I might have the ovaries side effect but i haven't been tested yet. I've noticed that your conversations have been about your kids with Blepharophimosis. Also that all of you have lots of questions. I'm no doctor but I'm sure I could answer the questions about social life.I got my eye lid surgery when I was about 1and a half. My eyes are still quite small but i see perfectly fine. Sometimes it's almost fun having a rare disease. But again I don't have the harsh side effects. Growing up with my disease so far, wasn't that hard. I did get slight teasingin the lower grades but now no one seems to notice my eyes. The other thing is I have an Astigmatism so I wear glasses which hides my eyes mostly.As for the teasing it's not much. Just, "Your Chineese!", "What's wrong with your eyes?" So nothing that bad. I wouldn't be so protective, like some of you said you'd try not to do. When I get the more polite "teasing" someone tries to start a conversation to figure out nicely, what's wrong with my eyes. For example. A camper at a camp once was staring at my eyes and then said ,"What countries are you from?" I told her I wasn't Asian and then I explained my disease.Wow, I have so much to say... I've only met one kid with my disease. She was three and i was eight. My mom was at Whole Foods and a girl n a shopping cart had my disease and my mom noticed the same eye appearence I had so she talked to the girl's mother. Not much of an interaction, though.When your kids get asked about their disease, let them explain it because the others will get it. If you answer every time, then they won't learn to accept and understand their eyes. When my three-year old cousin asked I told him in a simpler way, then he just went back to playing.I only wrote this if anyone has questions so please ask, if you want.Your Groupy,Margot :)On Jul 28, 2008, at 12:09 AM, Tonikka & wrote: its so weird that all of our children are growing up.. as i have been apart of this community  for a long long time!!! my son Lynden will be 11 this year and is finally done with all of his surgeries.. finally. (i hope) lol it seems like yesterday that he was just born and i was asked if he was burnt in a fire or was he blind, did he have down syndrome or is he sleeping. i keep looking at the new posts and see everyones distress when they have a new diagnosis of BPES and think thank goodness their child only has BPES.. and now that they are a part of our group they will be at ease eventually.  i say thank goodness as our family is lucky because we have a multitude of genetic stuff and my husband and i were tested and we have some matches  like  duchanes muscular dystrophy etc.. when we had our last daughter i was so thankful, yes lynden has had 6-7 surgeries (can't keep count) but none of my children have any neurological disorders.. so i am thankful lynden has BPES because that makes him a unique individual. he gets a laugh when we get his glasses renewed and he tells the ladies at the glasses place his prescription and they look at him in shock.. lol  wowee they will say you have a strong prescription.. then it proceeds on us picking out glasses and me trying to make him independent and picking his own.. however i interject and we always get the glasses i want..  just the mom in me i guess.. he went to camp this summer and was made fun of profusely but lynden has such a big heart he could look past it and see the good in people, i asked him if he wanted to go back and he said "hmm yah i guess i could". when lynden was born i was always worried about how he would turn out, he is so passive it scares me, his feelings get hurt really easy so yesterday he talked back to me for the first time all i could do was stand there with my mouth hung wide open and then i promptly burst out laughing then into tears..."my son has a personality" YAY!!! lol well he always did i was just worried about him being so passive and going to junior high (grade 7-9) those are the toughest years of a persons life, he has it rough because of his eyes and his passiveness.. i realize i cannot protect him forever, but i sure in heck will try.,OH MY GOODNESS i just wrote a novel and i am soo sorry!!my point was that i am thankful we all have these beautiful children with BPES so unique in their own little way. i am thankful to have physically met with some of you and to have talked with you, i hope we can all stay apart of this community for a long time to come and continue to welcome the new BPES children and adults and continue putting them at ease...thanks everyone for creating your wonderful children.. my motto is god only gives you what you are able to handle in life...... and that is life!!On 22-Jul-08, at 11:16 AM, Dana wrote: - Thanks for your response! I checked out your pictures and Imogen is adorable!! Congratulations!! HOnestly, had I not seen your childhood pictures I would have never known by your adult pictures that you had bleph. The doctor did amazing!! You look beautiful!!When will your daughter have her surgery? Dana > >> > Hey everyone!! It has been a long time since I have posted anything, > > but Brooklyn had her check up yesterday with her dr @ U of I and he > > will be performing the epithcanthus later this month. > > > > Anyone who has experience this I would appreciate hearing from you. > We > > have had the 'sling' surgery before, but not this. > > > > Thank you!!> > Dana> >> Tonikka & Chris<IMG_3853sep.jpg>Lynden,Hunter,Avery

[Guest guest]

Hi Margot,

Welcome.

> Dear everyone,

> My name is Margot. I'm 11 years old and my mom is part of this health

> group. Though, I'm the one with Blepharophimosis. I don't have the

> mental side effect or any others, yet.

The only " mental " side-effect associated with BPES is above-average

intelligence. Are you sure you don't have that? Looks like you have it,

to me. ;-) But don't worry, it probably subsides after 5 or 6 decades.

Rob W

Oz

[Guest guest]

Hello Margot...Just wanted to say, That was so well written! You sound like a gorgeous, positive inteligent young women. Thankyou for sharing your story with us.Machaela.(aus) - Thanks for your response! I checked out your pictures and Imogen is adorable!! Congratulations! ! HOnestly, had I not seen your childhood pictures I would have never known by your adult pictures that you had bleph. The doctor did amazing!! You look beautiful!!When will your daughter have her surgery? Dana > >> > Hey everyone!! It has been a long time since I have posted anything, > > but Brooklyn had her check up

yesterday with her dr @ U of I and he > > will be performing the epithcanthus later this month. > > > > Anyone who has experience this I would appreciate hearing from you. > We > > have had the 'sling' surgery before, but not this. > > > > Thank you!!> > Dana> >> Tonikka & Chris<IMG_3853sep. jpg>Lynden,Hunter, Avery

Find a better answer, faster with the new 7 Search - Start Here.

[Guest guest]

>

> I would like to thank the wonderful people who run this group for

doing such a great job!

> I would also like to thank them and all the members for being

helpful, supportive, and

> respectful to one another. This is a really good group!

>

>

>

you are quite welcome

[Guest guest]

>

> --- In , " " <cleptisvirgo@>

wrote:

> >

> > I would like to thank the wonderful people who run this group for

> doing such a great job!

> > I would also like to thank them and all the members for being

> helpful, supportive, and

> > respectful to one another. This is a really good group!

> >

> >

> >

>

>

>

> you are quite welcome

>

>I feel the same way also, Thank You all so much~~~

[Guest guest]

I have been over-whelmed by emails and comment posted just about everywhere.

Thank you for sending your energy and love.

I am still running full bore, but have got a little more sleep. I ordered in one

of those stop smoking kits the natural way/natural substances that will be here

in a couple days. I've decided that next day will be it, no more, no how, no

way. So continued energy in that will be appreciated very much.

I have to say, I haven't experienced the giving of this community from the other

side of it, like now. Sending love and healing is a given, but to be on the

receiving end is something I'm not sure how to describe. It is a refreshing

view, feeling, a retreat.

Thank you for your thoughts. The connections are real and pure.

Love D~

* I will eventually get around to thanking you all in the ways you responded...