RE: Introductions?/Suhad

[Guest guest]

Hello everyone,

My name is Suhad Haddad and my husband is Sal. I am sure many of you know

mw by now but I guess this is for the new members and I do think 's

idea is a good one. I have 2 girls, Samya and Leanna who are both in Heaven

now. Samya died December 10, 2002 of leigh's disease (T8993Cmutation of

90-92 & ) after being diagnosed about 3 days before her death. We knew

something was wrong all of her life but her symptoms were never profound

enough (at least that is what the doctors say) for mito to be considered.

She always looked normal, walked, ate but had developmental delays, eating

problems in infancy, bal;ance problems, fatigue, learning problems, ADD,

sensory integration issues, endocrine problems, renal tubular acidosis etc.

That is all I can think of now. One day she got sick, lost all of her skills

over a 3 week period, was misdiagnosed and then went to ICU for breathing

problems and died 33 days later when all her organs failed, and she became

brain dead and finally the ventilator was removed and she was gone. Leanna

was 5 at the time, displayed very similar symptoms, some worse and some more

mild but we knew she had the same. Leanna was tested and came back with a

higher % mutation and so her prognosis was worse. We spent the next 2 years

and 3 months with her trying to hold on to each day with her. Leanna went

much faster than Samya. Leanna got a mild cold March 3 and 5 days later

started a crisis. She was hospitalized a week later and 2 days after went to

ICU and died of respiratory failure 12 days later on palm Sunday March 20,

2005. We chose not to intubate so her organs did not fail bit by bit but she

stopped breathing. Leanna's death was more comfortable and peaceful because

we knew what she had and that knowledge allowed us to spare her of

unnecessary pain and procedures.

What they have is maternally inherited and I was tested and have a 54%

mutaiona which will not kill me unless I have massive stress in my life.I

find that statement very funny, don't you?

That is my story. I had 2 beautiful girls for 11 years of my life and now I

have none. I love my husband very much and without hime I do not know what I

would do. My faith in God is strong and what keeps me going is my assured

hope and promise that I will see my babies in heaven andthat is is not the

end of thestory.

We have amemorial website for Samya at www.samyahaddad.com which I am

hoping soon to turn into a dual site for Samya and Leanna. Now my girls are

together in heaven mito free and doing all that they could not here on

earth.

May god bless you all,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

(died 3-20-05)

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Introductions?

I've been thinking that it would be nice if we all re-introduced

ourselves. There are quite a few new families in the group and it

would be nice to have all the pertinent info on a family in one

e-mail, I think it would make it easier to remember who's who that

way. Plus, I love seeing photos of the mito kids. And wouldn't it be

nice if we had photos of ourselves too, so we can see who we're

talking to?

Anyway, just a thought, anyone who wants to and has a free moment is

welcome to send an e-mail.

So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3

children. , 12, who is healthy and plays piano. Kelsey, 11, is

also healthy. She is a big help with Sheldon and plays the flute.

Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder).

Sheldon is nonverbal, has developmental delays, reflux, is delayed in

all areas, sensory integration problems, pronated feet, low muscle

tone, esophageal dysmotility, I don't remember what else right now.

He was in the hospital for 8 days earlier this month (over Easter

) with a virus so we're still recovering from that.

Every free moment I have right now is spent trying to get our house

ready to sell, we have to sell it because we can't afford it on one

income and I can't work because I'm home caring for Sheldon. Oh yeah,

we live in Malta, NY.

I'll attach one photo but I know not everyone receives photos with

the e-mails so I've put updated photos in the photos area on the

yahoo mito group site under 'Sheldon and Family.'

I don't know what I'd do without this group, it is so good to be able

to talk with others who are going through the same things.

Stacey

Please contact mito-owner with any problems or questions.

[Guest guest]

Suhad,

Thanks for the response, it's nice to have a synopsis like that.

I too am very glad you are still part of this group. I think of you

every day and am very sorry for your loss. We're here for you... wish

we all could help more.

Hello everyone,

My name is Suhad Haddad and my husband is Sal. I am sure many

of you know

mw by now but I guess this is for the new members and I do think

's

idea is a good one. I have 2 girls, Samya and Leanna who are both in

Heaven

now. Samya died December 10, 2002 of leigh's disease (T8993Cmutation

of

90-92 & ) after being diagnosed about 3 days before her death. We

knew

something was wrong all of her life but her symptoms were never

profound

enough (at least that is what the doctors say) for mito to be

considered.

She always looked normal, walked, ate but had developmental delays,

eating

problems in infancy, bal;ance problems, fatigue, learning problems,

ADD,

sensory integration issues, endocrine problems, renal tubular acidosis

etc.

That is all I can think of now. One day she got sick, lost all of her

skills

over a 3 week period, was misdiagnosed and then went to ICU for

breathing

problems and died 33 days later when all her organs failed, and she

became

brain dead and finally the ventilator was removed and she was gone.

Leanna

was 5 at the time, displayed very similar symptoms, some worse and

some more

mild but we knew she had the same. Leanna was tested and came back

with a

higher % mutation and so her prognosis was worse. We spent the next 2

years

and 3 months with her trying to hold on to each day with her. Leanna

went

much faster than Samya. Leanna got a mild cold March 3 and 5

days later

started a crisis. She was hospitalized a week later and 2 days after

went to

ICU and died of respiratory failure 12 days later on palm Sunday March

20,

2005. We chose not to intubate so her organs did not fail bit by bit

but she

stopped breathing. Leanna's death was more comfortable and peaceful

because

we knew what she had and that knowledge allowed us to spare her of

unnecessary pain and procedures.

What they have is maternally inherited and I was tested and have a

54%

mutaiona which will not kill me unless I have massive stress in my

life.I

find that statement very funny, don't you?

That is my story. I had 2 beautiful girls for 11 years of my life and

now I

have none. I love my husband very much and without hime I do not know

what I

would do. My faith in God is strong and what keeps me going is my

assured

hope and promise that I will see my babies in heaven andthat is is not

the

end of thestory.

We have amemorial website for Samya at

www.samyahaddad.com which I am

hoping soon to turn into a dual site for Samya and Leanna. Now my

girls are

together in heaven mito free and doing all that they could not here

on

earth.

May god bless you all,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's

Synd.) & Leanna

(died 3-20-05)

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Introductions?

I've been thinking that it would be nice if we all re-introduced

ourselves. There are quite a few new families in the group and it

would be nice to have all the pertinent info on a family in one

e-mail, I think it would make it easier to remember who's who that

way. Plus, I love seeing photos of the mito kids. And wouldn't it

be

nice if we had photos of ourselves too, so we can see who we're

talking to?

Anyway, just a thought, anyone who wants to and has a free moment

is

welcome to send an e-mail.

So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3

children. , 12, who is healthy and plays piano. Kelsey, 11,

is

also healthy. She is a big help with Sheldon and plays the

flute.

Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial

disorder).

Sheldon is nonverbal, has developmental delays, reflux, is delayed

in

all areas, sensory integration problems, pronated feet, low muscle

tone, esophageal dysmotility, I don't remember what else right

now.

He was in the hospital for 8 days earlier this month (over Easter

) with a virus so we're still recovering from that.

Every free moment I have right now is spent trying to get our

house

ready to sell, we have to sell it because we can't afford it on

one

income and I can't work because I'm home caring for Sheldon. Oh

yeah,

we live in Malta, NY.

I'll attach one photo but I know not everyone receives photos with

the e-mails so I've put updated photos in the photos area on the

yahoo mito group site under 'Sheldon and Family.'

I don't know what I'd do without this group, it is so good to be

able

to talk with others who are going through the same things.

Stacey

Please contact mito-owner with any problems or

questions.