Leanna death/details

[Guest guest]

To everyone,

I obviously have not posted in a while. I want to thank all

of you for your prayers and support while we watched Leanna lose her battle to mito on March 20th.

I still cannot come to grips with how quickly she went. 14 days in the

hospital, 12 of them in ICU. We chose to not intubate her and she wenr

peacefully with no suffering and was able to smile until the day before she

died. We did not want her to suffer like samya and the MRI showed that the

disease was at the end stage and it was obvious from her clinical symptoms. It

was a tough decision but we knew that intubation would have stretched her

suffering only to allow her organ failure and her brainTO die before she was

extubated. We have no regrets after seeing what intubation did to Samya. Leann

died without a cough, a cold, pneumonia, or any bothersome issue. We gave her

morphine that Sunday at 8 am because she was looking like it was too painful

for her and they were having to give her manual breath for over 5 minutes. She

died 8 hrs later at 400 pm. I thought she might die on Samya’s birthday

(march 17Th) but she hung in there. As much as I tried to prepare

myself for the last 2 years for the reality of her condition and how quickly

she could die and how the simplest cold could cause it, I still could not be

ready for how quick it happened. Once again, it was a small congection cold on

a Tuesday she had with no fever. She told me was tired. I kep her home on Wednesday

and Thursday and Friday she went to school. She tookm a spelling test on Friday

and got 100%. I took her home Friday and she was real tired. She started ptosis

by the evening. My husband said when he came home from work that night and saw

her on the couch he saw samya in her. He cried so much that night and so did I.

We had the instinct this was the “one” feared illness. I spent the

weekend getting fluid and calories in her and on Sunday she choked on her

dinner in an abnormal way. She was having trouble swallowing and was too tired

to chew. On Monday, we took her to her mito

genetics doctor and he said if she could not keep caloried down, go to ER. I

was able to get her to eat well enough until Wednesday morning. I took her to

ER and in 24 hrs she made a turn around for the worst. Nothing they did helped.

She was on massive IV and NG tube fed. The first night she lost bladder control

twice at night in the hospital and I knew this was it because that was Samya

all over again. The mito

doc said there was nothing more we could do because the disease was moving too

fast. By Friday she was in ICU and I finally stopped taking her to the bathroom

myself because she had no head control on the toilet. She was officially in a

diaper but still copmpletely aware cognitively. How sick mito is that robs a child of everything. On

Monday an MRI proved what we knew already and we gave her comfort and laughed

with her and loved her and kept our tears out of the room. My husband got to

spend every day with her and every minute because his awesome brother drove 17

hrs from Colorado

when he heard about Leanna and came to run our business so her dad can be with

her. We are forever grateful to him because he gave us something money could

never buy and that is time with Leanna. Her funeral service was beautiful and

we found a plot right next to Samya. Ironically enough, last year when my

brother in law Sam (the pilot) died that plot was unavailable because it was

pre purchased. The people copped out of it and it was available for Leanna. I guess

God was saving it for Leanna. My heart is forever broken but I pray daily for

strength to live this life until God decided it is my time. I love you all and

may God bless you all.

Love,

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

Leanna with same disease.

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

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

[Guest guest]

Suhad,

You continue to amaze me with your grace even in this such difficult time. As I read your post about Leanna's last days the tears began to fall. You and your husband are amazing. Leanna went in peace.

My daughter and her husband have already made the decision of no vent when the time comes for Audrey. We don't like to think about it, and we try not to, but when I read your post it makes this awful disease real all over again. Each one on this list has to make their own decisions about what is enough. It has to be a very personal decision, and the most difficult one of a lifetime. Leanna knew she was loved and I am sure she was very comforted by being with the two most important people in her life, her mum and dad.

My prayers continue to be with you as you enter this different time in your life. I will not even presume to know how you feel. Just know we are here for you. Hopefully you will stay close to this group, as I know we can all learn from you.

May you find peace in your memories of your two beautiful daughters,

Kathy Boone, grandma to Audrey, 3 yearssuhad1970@... wrote:

To everyone,

I obviously have not posted in a while. I want to thank all of you for your prayers and support while we watched Leanna lose her battle to mito on March 20th. I still cannot come to grips with how quickly she went. 14 days in the hospital, 12 of them in ICU. We chose to not intubate her and she wenr peacefully with no suffering and was able to smile until the day before she died. We did not want her to suffer like samya and the MRI showed that the disease was at the end stage and it was obvious from her clinical symptoms. It was a tough decision but we knew that intubation would have stretched her suffering only to allow her organ failure and her brainTO die before she was extubated. We have no regrets after seeing what

intubation did to Samya. Leann died without a cough, a cold, pneumonia, or any bothersome issue. We gave her morphine that Sunday at 8 am because she was looking like it was too painful for her and they were having to give her manual breath for over 5 minutes. She died 8 hrs later at 400 pm. I thought she might die on Samya’s birthday (march 17Th) but she hung in there. As much as I tried to prepare myself for the last 2 years for the reality of her condition and how quickly she could die and how the simplest cold could cause it, I still could not be ready for how quick it happened. Once again, it was a small congection cold on a Tuesday she had with no fever. She told me was tired. I kep her home on Wednesday and Thursday and Friday she went to school. She tookm a spelling test on Friday and got 100%. I took her home Friday and she was real tired. She started ptosis by the evening. My husband said when he came home from work that night and saw her on the couch he saw

samya in her. He cried so much that night and so did I. We had the instinct this was the “one” feared illness. I spent the weekend getting fluid and calories in her and on Sunday she choked on her dinner in an abnormal way. She was having trouble swallowing and was too tired to chew. On Monday, we took her to her mito genetics doctor and he said if she could not keep caloried down, go to ER. I was able to get her to eat well enough until Wednesday morning. I took her to ER and in 24 hrs she made a turn around for the worst. Nothing they did helped. She was on massive IV and NG tube fed. The first night she lost bladder control twice at night in the hospital and I knew this was it because that was Samya all over again. The mito doc said there was nothing more we could do because the disease was moving too fast. By Friday she was in ICU and I finally stopped

taking her to the bathroom myself because she had no head control on the toilet. She was officially in a diaper but still copmpletely aware cognitively. How sick mito is that robs a child of everything. On Monday an MRI proved what we knew already and we gave her comfort and laughed with her and loved her and kept our tears out of the room. My husband got to spend every day with her and every minute because his awesome brother drove 17 hrs from Colorado when he heard about Leanna and came to run our business so her dad can be with her. We are forever grateful to him because he gave us something money could never buy and that is time with Leanna. Her funeral service was beautiful and we found a plot right next to Samya. Ironically enough, last year when my brother in law Sam (the pilot) died that plot was unavailable because it was pre purchased. The

people copped out of it and it was available for Leanna. I guess God was saving it for Leanna. My heart is forever broken but I pray daily for strength to live this life until God decided it is my time. I love you all and may God bless you all.

Love,

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

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

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Please contact mito-owner with any problems or questions.

[Guest guest]

Suhad,

Your strength amazes and impowers me. I find myself thinking of your family very often. I'm still praying for you. Thank you for the update.

Download your favorite songs at MSN Music - Over 1 million songs for just 99¢ each

[Guest guest]

Suhad, Thank you for sharing. Your strength and courage amaze me. We

are all here for you when you need us. Thank you for being a part of

this group and helping us in more ways than you could ever know. You

are such an inspiration.

You are in my prayers.

Geri-Anne and Wyatt, complex I

> To everyone,

>

> I obviously have not posted in a while. I want to thank all of you

for your

> prayers and support while we watched Leanna lose her battle to mito

on March

> 20th. I still cannot come to grips with how quickly she went. 14

days in the

> hospital, 12 of them in ICU. We chose to not intubate her and she wenr

> peacefully with no suffering and was able to smile until the day

before she

> died. We did not want her to suffer like samya and the MRI showed

that the

> disease was at the end stage and it was obvious from her clinical

symptoms.

> It was a tough decision but we knew that intubation would have

stretched her

> suffering only to allow her organ failure and her brainTO die before

she was

> extubated. We have no regrets after seeing what intubation did to Samya.

> Leann died without a cough, a cold, pneumonia, or any bothersome

issue. We

> gave her morphine that Sunday at 8 am because she was looking like

it was

> too painful for her and they were having to give her manual breath

for over

> 5 minutes. She died 8 hrs later at 400 pm. I thought she might die on

> Samya's birthday (march 17Th) but she hung in there. As much as I

tried to

> prepare myself for the last 2 years for the reality of her condition

and how

> quickly she could die and how the simplest cold could cause it, I still

> could not be ready for how quick it happened. Once again, it was a small

> congection cold on a Tuesday she had with no fever. She told me was

tired. I

> kep her home on Wednesday and Thursday and Friday she went to

school. She

> tookm a spelling test on Friday and got 100%. I took her home Friday

and she

> was real tired. She started ptosis by the evening. My husband said

when he

> came home from work that night and saw her on the couch he saw samya

in her.

> He cried so much that night and so did I. We had the instinct this

was the

> " one " feared illness. I spent the weekend getting fluid and calories

in her

> and on Sunday she choked on her dinner in an abnormal way. She was

having

> trouble swallowing and was too tired to chew. On Monday, we took her

to her

> mito genetics doctor and he said if she could not keep caloried

down, go to

> ER. I was able to get her to eat well enough until Wednesday

morning. I took

> her to ER and in 24 hrs she made a turn around for the worst.

Nothing they

> did helped. She was on massive IV and NG tube fed. The first night

she lost

> bladder control twice at night in the hospital and I knew this was it

> because that was Samya all over again. The mito doc said there was

nothing

> more we could do because the disease was moving too fast. By Friday

she was

> in ICU and I finally stopped taking her to the bathroom myself

because she

> had no head control on the toilet. She was officially in a diaper

but still

> copmpletely aware cognitively. How sick mito is that robs a child of

> everything. On Monday an MRI proved what we knew already and we gave her

> comfort and laughed with her and loved her and kept our tears out of the

> room. My husband got to spend every day with her and every minute

because

> his awesome brother drove 17 hrs from Colorado when he heard about

Leanna

> and came to run our business so her dad can be with her. We are forever

> grateful to him because he gave us something money could never buy

and that

> is time with Leanna. Her funeral service was beautiful and we found

a plot

> right next to Samya. Ironically enough, last year when my brother in

law Sam

> (the pilot) died that plot was unavailable because it was pre

purchased. The

> people copped out of it and it was available for Leanna. I guess God was

> saving it for Leanna. My heart is forever broken but I pray daily for

> strength to live this life until God decided it is my time. I love

you all

> and may God bless you all.

>

> Love,

>

>

>

>

>

>

>

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

> with same disease.

>

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

>

> Email: Suhad1970@s...

>

> Alt Email: Suhad@S...

>

> AiM Chat: Suhad1970

[Guest guest]

Dear Suhad,

There is not a day that I don't think of the families that have lost children to this disease,

and you have been on my mind so much. I know that little Samya,Leanna, Karli Beth,

and Sam are now seeing only joy. It is a joy that is beyond our comprehension, and they have overcome mito disorder. It breaks my heart whenever Collin talks about Heaven, and he says he will not wear oxygen and not be tired or have sore legs. I know he's right, but it is hard for me to think of now. It is hard for us left behind temporarily, but you will see your little girls again and rejoice with them. I am so very sorry for the pain you must be feeling, I can't even begin to know how you must feel. You sound so strong, know that you have inspired so many of us here to have that same strength. Take care of yourself, Jonisuhad1970@... wrote:

To everyone,

I obviously have not posted in a while. I want to thank all of you for your prayers and support while we watched Leanna lose her battle to mito on March 20th. I still cannot come to grips with how quickly she went. 14 days in the hospital, 12 of them in ICU. We chose to not intubate her and she wenr peacefully with no suffering and was able to smile until the day before she died. We did not want her to suffer like samya and the MRI showed that the disease was at the end stage and it was obvious from her clinical symptoms. It was a tough decision but we knew that intubation would have stretched her suffering only to allow her organ failure and her brainTO die before she was extubated. We have no regrets after seeing what

intubation did to Samya. Leann died without a cough, a cold, pneumonia, or any bothersome issue. We gave her morphine that Sunday at 8 am because she was looking like it was too painful for her and they were having to give her manual breath for over 5 minutes. She died 8 hrs later at 400 pm. I thought she might die on Samya’s birthday (march 17Th) but she hung in there. As much as I tried to prepare myself for the last 2 years for the reality of her condition and how quickly she could die and how the simplest cold could cause it, I still could not be ready for how quick it happened. Once again, it was a small congection cold on a Tuesday she had with no fever. She told me was tired. I kep her home on Wednesday and Thursday and Friday she went to school. She tookm a spelling test on Friday and got 100%. I took her home Friday and she was real tired. She started ptosis by the evening. My husband said when he came home from work that night and saw her on the couch he saw

samya in her. He cried so much that night and so did I. We had the instinct this was the “one” feared illness. I spent the weekend getting fluid and calories in her and on Sunday she choked on her dinner in an abnormal way. She was having trouble swallowing and was too tired to chew. On Monday, we took her to her mito genetics doctor and he said if she could not keep caloried down, go to ER. I was able to get her to eat well enough until Wednesday morning. I took her to ER and in 24 hrs she made a turn around for the worst. Nothing they did helped. She was on massive IV and NG tube fed. The first night she lost bladder control twice at night in the hospital and I knew this was it because that was Samya all over again. The mito doc said there was nothing more we could do because the disease was moving too fast. By Friday she was in ICU and I finally stopped

taking her to the bathroom myself because she had no head control on the toilet. She was officially in a diaper but still copmpletely aware cognitively. How sick mito is that robs a child of everything. On Monday an MRI proved what we knew already and we gave her comfort and laughed with her and loved her and kept our tears out of the room. My husband got to spend every day with her and every minute because his awesome brother drove 17 hrs from Colorado when he heard about Leanna and came to run our business so her dad can be with her. We are forever grateful to him because he gave us something money could never buy and that is time with Leanna. Her funeral service was beautiful and we found a plot right next to Samya. Ironically enough, last year when my brother in law Sam (the pilot) died that plot was unavailable because it was pre purchased. The

people copped out of it and it was available for Leanna. I guess God was saving it for Leanna. My heart is forever broken but I pray daily for strength to live this life until God decided it is my time. I love you all and may God bless you all.

Love,

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

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

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Please contact mito-owner with any problems or questions.

Yahoo! Messenger Show us what our next emoticon should look like. Join the fun.

[Guest guest]

((((((Suhad))))))),

We embrace you and your husband. Tonight as I read "Love is All you Need" to , my heart imagined you reading to Leanna. I was in tears as I finished the book. All the tender moments you have shared with us, bring us closer together.

--------

Heaven Holds Their Angels

One afternoon when the day was bleak,

Heaven took a daughter's hand and

gave her strength where she was weak.

No more pain will she ever feel,

it came so sudden-it doesn't seem real...

And now as her parents wait in their grief,

it's love that strengthens their belief.

Because they trust Him so,

they let their daughter Leanna go.

So Heaven holds 2 daughters

until their parents are sent to be with them too.

Samya and Leanna's lives made an everlasting impression.

I am so forever grateful for knowing you.

Holding you in the utmost prayer,

divinely seeking His comfort and care.

Take care and God Bless you all.

(Ann Eide-Written in Memory of Samya and Leanna Haddad)

-------

If there is any way I can help, call me. I am here for you always.

Love and Sympathies-

Ann and Family

suhad1970@... wrote:

To everyone,

I obviously have not posted in a while. I want to thank all of you for your prayers and support while we watched Leanna lose her battle to mito on March 20th. I still cannot come to grips with how quickly she went. 14 days in the hospital, 12 of them in ICU. We chose to not intubate her and she wenr peacefully with no suffering and was able to smile until the day before she died. We did not want her to suffer like samya and the MRI showed that the disease was at the end stage and it was obvious from her clinical symptoms. It was a tough decision but we knew that intubation would have stretched her suffering only to allow her organ failure and her brainTO die before she was extubated. We have no regrets after seeing what

intubation did to Samya. Leann died without a cough, a cold, pneumonia, or any bothersome issue. We gave her morphine that Sunday at 8 am because she was looking like it was too painful for her and they were having to give her manual breath for over 5 minutes. She died 8 hrs later at 400 pm. I thought she might die on Samya’s birthday (march 17Th) but she hung in there. As much as I tried to prepare myself for the last 2 years for the reality of her condition and how quickly she could die and how the simplest cold could cause it, I still could not be ready for how quick it happened. Once again, it was a small congection cold on a Tuesday she had with no fever. She told me was tired. I kep her home on Wednesday and Thursday and Friday she went to school. She tookm a spelling test on Friday and got 100%. I took her home Friday and she was real tired. She started ptosis by the evening. My husband said when he came home from work that night and saw her on the couch he saw

samya in her. He cried so much that night and so did I. We had the instinct this was the “one” feared illness. I spent the weekend getting fluid and calories in her and on Sunday she choked on her dinner in an abnormal way. She was having trouble swallowing and was too tired to chew. On Monday, we took her to her mito genetics doctor and he said if she could not keep caloried down, go to ER. I was able to get her to eat well enough until Wednesday morning. I took her to ER and in 24 hrs she made a turn around for the worst. Nothing they did helped. She was on massive IV and NG tube fed. The first night she lost bladder control twice at night in the hospital and I knew this was it because that was Samya all over again. The mito doc said there was nothing more we could do because the disease was moving too fast. By Friday she was in ICU and I finally stopped

taking her to the bathroom myself because she had no head control on the toilet. She was officially in a diaper but still copmpletely aware cognitively. How sick mito is that robs a child of everything. On Monday an MRI proved what we knew already and we gave her comfort and laughed with her and loved her and kept our tears out of the room. My husband got to spend every day with her and every minute because his awesome brother drove 17 hrs from Colorado when he heard about Leanna and came to run our business so her dad can be with her. We are forever grateful to him because he gave us something money could never buy and that is time with Leanna. Her funeral service was beautiful and we found a plot right next to Samya. Ironically enough, last year when my brother in law Sam (the pilot) died that plot was unavailable because it was pre purchased. The

people copped out of it and it was available for Leanna. I guess God was saving it for Leanna. My heart is forever broken but I pray daily for strength to live this life until God decided it is my time. I love you all and may God bless you all.

Love,

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

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

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Please contact mito-owner with any problems or questions.

Yahoo! Messenger Show us what our next emoticon should look like. Join the fun.

[Guest guest]

I don't think I have ever read something so precious and with such care, as I have this morning. The thought and love you put into that poem shows just how much people on this list TRULY care about each other...and it is with this determination this disease will be conquered.

Donna

mito mom to 5 mito kids.

Re: Leanna death/details

((((((Suhad))))))),

We embrace you and your husband. Tonight as I read "Love is All you Need" to , my heart imagined you reading to Leanna. I was in tears as I finished the book. All the tender moments you have shared with us, bring us closer together.

--------

Heaven Holds Their Angels

One afternoon when the day was bleak,

Heaven took a daughter's hand and

gave her strength where she was weak.

No more pain will she ever feel,

it came so sudden-it doesn't seem real...

And now as her parents wait in their grief,

it's love that strengthens their belief.

Because they trust Him so,

they let their daughter Leanna go.

So Heaven holds 2 daughters

until their parents are sent to be with them too.

Samya and Leanna's lives made an everlasting impression.

I am so forever grateful for knowing you.

Holding you in the utmost prayer,

divinely seeking His comfort and care.

Take care and God Bless you all.

(Ann Eide-Written in Memory of Samya and Leanna Haddad)

-------

If there is any way I can help, call me. I am here for you always.

Love and Sympathies-

Ann and Family

suhad1970@... wrote:

To everyone,

I obviously have not posted in a while. I want to thank all of you for your prayers and support while we watched Leanna lose her battle to mito on March 20th. I still cannot come to grips with how quickly she went. 14 days in the hospital, 12 of them in ICU. We chose to not intubate her and she wenr peacefully with no suffering and was able to smile until the day before she died. We did not want her to suffer like samya and the MRI showed that the disease was at the end stage and it was obvious from her clinical symptoms. It was a tough decision but we knew that intubation would have stretched her suffering only to allow her organ failure and her brainTO die before she was extubated. We have no regrets after seeing what intubation did to Samya. Leann died without a cough, a cold, pneumonia, or any bothersome issue. We gave her morphine that Sunday at 8 am because she was looking like it was too painful for her and they were having to give her manual breath for over 5 minutes. She died 8 hrs later at 400 pm. I thought she might die on Samya’s birthday (march 17Th) but she hung in there. As much as I tried to prepare myself for the last 2 years for the reality of her condition and how quickly she could die and how the simplest cold could cause it, I still could not be ready for how quick it happened. Once again, it was a small congection cold on a Tuesday she had with no fever. She told me was tired. I kep her home on Wednesday and Thursday and Friday she went to school. She tookm a spelling test on Friday and got 100%. I took her home Friday and she was real tired. She started ptosis by the evening. My husband said when he came home from work that night and saw her on the couch he saw samya in her. He cried so much that night and so did I. We had the instinct this was the “one” feared illness. I spent the weekend getting fluid and calories in her and on Sunday she choked on her dinner in an abnormal way. She was having trouble swallowing and was too tired to chew. On Monday, we took her to her mito genetics doctor and he said if she could not keep caloried down, go to ER. I was able to get her to eat well enough until Wednesday morning. I took her to ER and in 24 hrs she made a turn around for the worst. Nothing they did helped. She was on massive IV and NG tube fed. The first night she lost bladder control twice at night in the hospital and I knew this was it because that was Samya all over again. The mito doc said there was nothing more we could do because the disease was moving too fast. By Friday she was in ICU and I finally stopped taking her to the bathroom myself because she had no head control on the toilet. She was officially in a diaper but still copmpletely aware cognitively. How sick mito is that robs a child of everything. On Monday an MRI proved what we knew already and we gave her comfort and laughed with her and loved her and kept our tears out of the room. My husband got to spend every day with her and every minute because his awesome brother drove 17 hrs from Colorado when he heard about Leanna and came to run our business so her dad can be with her. We are forever grateful to him because he gave us something money could never buy and that is time with Leanna. Her funeral service was beautiful and we found a plot right next to Samya. Ironically enough, last year when my brother in law Sam (the pilot) died that plot was unavailable because it was pre purchased. The people copped out of it and it was available for Leanna. I guess God was saving it for Leanna. My heart is forever broken but I pray daily for strength to live this life until God decided it is my time. I love you all and may God bless you all.

Love,

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

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

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Please contact mito-owner with any problems or questions.

Yahoo! MessengerShow us what our next emoticon should look like. Join the fun. Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks for sharing more with us. I know it has been very hard for you

dealing with another loss and I can't believe how much strength you have

shown. You have been an inspiration to us all. I am not sure you received

my note to your personal e-mail address or not, but if not, I was wondering

if you would accept a meal from me via my sister-in-law who lives VERY near

to you. I have talked with her about everything that has been happening and

she would LOVE to do this for you. I am clear across the US from you and

really wanted to do something, so if this is something you are open to could

you please write to me at honeybear50317@... and let me know. If it is

possible to share your phone number with me then she can call you to better

know when might be the best time to drop off the meal. Also, it will help

me/her to know what foods to avoid.

We will continue to pray for you and your husband for your continued

strength and peace.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

Leanna death/details

> To everyone,

>

> I obviously have not posted in a while. I want to thank all of you for

> your

> prayers and support while we watched Leanna lose her battle to mito on

> March

> 20th. I still cannot come to grips with how quickly she went. 14 days in

> the

> hospital, 12 of them in ICU. We chose to not intubate her and she wenr

> peacefully with no suffering and was able to smile until the day before

> she

> died. We did not want her to suffer like samya and the MRI showed that

> the

> disease was at the end stage and it was obvious from her clinical

> symptoms.

> It was a tough decision but we knew that intubation would have stretched

> her

> suffering only to allow her organ failure and her brainTO die before she

> was

> extubated. We have no regrets after seeing what intubation did to Samya.

> Leann died without a cough, a cold, pneumonia, or any bothersome issue. We

> gave her morphine that Sunday at 8 am because she was looking like it was

> too painful for her and they were having to give her manual breath for

> over

> 5 minutes. She died 8 hrs later at 400 pm. I thought she might die on

> Samya's birthday (march 17Th) but she hung in there. As much as I tried to

> prepare myself for the last 2 years for the reality of her condition and

> how

> quickly she could die and how the simplest cold could cause it, I still

> could not be ready for how quick it happened. Once again, it was a small

> congection cold on a Tuesday she had with no fever. She told me was tired.

> I

> kep her home on Wednesday and Thursday and Friday she went to school. She

> tookm a spelling test on Friday and got 100%. I took her home Friday and

> she

> was real tired. She started ptosis by the evening. My husband said when he

> came home from work that night and saw her on the couch he saw samya in

> her.

> He cried so much that night and so did I. We had the instinct this was the

> " one " feared illness. I spent the weekend getting fluid and calories in

> her

> and on Sunday she choked on her dinner in an abnormal way. She was having

> trouble swallowing and was too tired to chew. On Monday, we took her to

> her

> mito genetics doctor and he said if she could not keep caloried down, go

> to

> ER. I was able to get her to eat well enough until Wednesday morning. I

> took

> her to ER and in 24 hrs she made a turn around for the worst. Nothing they

> did helped. She was on massive IV and NG tube fed. The first night she

> lost

> bladder control twice at night in the hospital and I knew this was it

> because that was Samya all over again. The mito doc said there was nothing

> more we could do because the disease was moving too fast. By Friday she

> was

> in ICU and I finally stopped taking her to the bathroom myself because she

> had no head control on the toilet. She was officially in a diaper but

> still

> copmpletely aware cognitively. How sick mito is that robs a child of

> everything. On Monday an MRI proved what we knew already and we gave her

> comfort and laughed with her and loved her and kept our tears out of the

> room. My husband got to spend every day with her and every minute because

> his awesome brother drove 17 hrs from Colorado when he heard about Leanna

> and came to run our business so her dad can be with her. We are forever

> grateful to him because he gave us something money could never buy and

> that

> is time with Leanna. Her funeral service was beautiful and we found a plot

> right next to Samya. Ironically enough, last year when my brother in law

> Sam

> (the pilot) died that plot was unavailable because it was pre purchased.

> The

> people copped out of it and it was available for Leanna. I guess God was

> saving it for Leanna. My heart is forever broken but I pray daily for

> strength to live this life until God decided it is my time. I love you all

> and may God bless you all.

>

> Love,

>

>

>

>

>

>

>

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

> with same disease.

>

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

>

> Email: Suhad1970@...

>

> Alt Email: Suhad@...

>

> AiM Chat: Suhad1970

>

>

>

>

[Guest guest]

Suhad,

I haven't known what to say to you,,,so haven't replied. I'm so sorry for your loss,,but very glad that she went with no suffering. It must have given you such peace to not intubate,you did such a great job explaining it. I didn't realize that intubation prolonged their suffering. If I am ever in that situation,I hope and pray that I can handle it with the grace and strength that you have. To be able to keep your tears out of the room,for Leanna,,is incredibly strong. You are an unbelievable woman,,even if you don't realize it. I pray that God will give you strength to face each day,,and to know that we are all here for you.Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________