NEW TO MITO DISEASE

[Guest guest]

MY NAME IS DEANNA AND I HAVE LOST 2 CHILDREN AGES 12 AND 13 TO

MITOCHONDRIAL DISEASE IN THE LAST 9 MONTHS. MY CHILDREN WERE TWINS. I

LOST MY SON THEN LOST MY DAUGHTER 9 MONTHS LATER. THESE CHILDREN WERE

ACTIVE CHILDREN THEN ONE DAY THERE ORGANS STARTED SHUTTING DOWN. I

REALLY DONT UNDERSTAND WHAT IS GOING ON WITH THIS DISEASE. IF ANYONE

COULD HELP ME UNDERSTAND PLEASE HELP. MY DAUGHTERS ARE 17 AND 15 AND

THEY JUST STARTED SHOWING SYMPTOMS AND WERE DIAGNOSED WITH THE

DISEASE. WE ARE JUST OVERWHELMED WITH ALL THIS. MY SON WAS PLAYING

FOOTBALL ONE DAY AND ON LIFESUPPORT THE NEXT. MY DAUGHTER WAS A

CHEERLEADER AND VERY ACTIVE. SHE WAS FINE ONE DAY AND HER BLADDER

STOPPED WORKING THE NEXT. THEN SHE WAS TRACHED AND SO WAS HE BECAUSE

OF SIEZURES AND APNEA. THEN IT WAS DOWNHILL FROM THERE. THEN LAST

WEEK MY 17 YEAR OLD STOP BREATHING AND IS HAVEING APNEA AROUNG 30 TO

40 TIMES A DAY. ITS ONLY BEEN 3 MONTHS SINCE WE LOST THE LAST

ONE. PLEASE HELP

[Guest guest]

DEANNA MY HEART AND PRAYERS GO OUT TOO YOU. I COULDNT IMAGINE THE PAIN YOU ARE GOING THROUGH RIGHT NOW ALL I CAN DO IS SEND MY PRAYERS TOO YOU AND YOUR FAMILY. GOD BLESS YOU JENNIEheavenlytwins1990 wrote:

MY NAME IS DEANNA AND I HAVE LOST 2 CHILDREN AGES 12 AND 13 TO MITOCHONDRIAL DISEASE IN THE LAST 9 MONTHS. MY CHILDREN WERE TWINS. I LOST MY SON THEN LOST MY DAUGHTER 9 MONTHS LATER. THESE CHILDREN WERE ACTIVE CHILDREN THEN ONE DAY THERE ORGANS STARTED SHUTTING DOWN. I REALLY DONT UNDERSTAND WHAT IS GOING ON WITH THIS DISEASE. IF ANYONE COULD HELP ME UNDERSTAND PLEASE HELP. MY DAUGHTERS ARE 17 AND 15 AND THEY JUST STARTED SHOWING SYMPTOMS AND WERE DIAGNOSED WITH THE DISEASE. WE ARE JUST OVERWHELMED WITH ALL THIS. MY SON WAS PLAYING FOOTBALL ONE DAY AND ON LIFESUPPORT THE NEXT. MY DAUGHTER WAS A CHEERLEADER AND VERY ACTIVE. SHE WAS FINE ONE DAY AND HER BLADDER STOPPED WORKING THE NEXT. THEN SHE WAS TRACHED AND SO WAS HE BECAUSE OF SIEZURES AND APNEA. THEN IT WAS DOWNHILL FROM THERE. THEN LAST WEEK MY 17 YEAR OLD STOP BREATHING AND IS

HAVEING APNEA AROUNG 30 TO 40 TIMES A DAY. ITS ONLY BEEN 3 MONTHS SINCE WE LOST THE LAST ONE. PLEASE HELPPlease contact mito-owner with any problems or questions.

[Guest guest]

Dear Deanna,

I am so sorry for your tremendous loss!! My heart is breaking!! I'm

sorry I have no advice for you, as I'm new at this too. I just

wanted you to know that you and your family are in my prayers.

e

[Guest guest]

I am so sorry to hear of the losses you have had. I can't imagine how overwhelmed of emotions you must be. I am sorry that I do not have too much information too pass along, other than please stay with this group. I sincerely believe that I would not have the strength I now have to deal with my daughters illness, without this group. I highly suggest that your children be seen by a mito specialist, if they have not already. Our daughter started showing symptoms at three weeks of age, and I do not think she would have made it nearly as far as she has (2 years old now) without a proper diagnosis and a great team of doctors who are very ontop of her problems. We are fortunate because our daughter is responding to treatment very well. Are your other children recieving a mito cocktail yet? I know it does not always work, but our daughter is a clear example that sometimes it works more than they can imagine. Best wishes.

[Guest guest]

Dear Deanna,

I am so sorry for your incredible losses. My heart goes out to you and so

do my prayers. I lost one daughter, Samya, at age 8 and a half and have one

girl left. Her name is Leanna and she just turned 7. She has the same

disease and I am told will most likely not live very long. Just like you,

Samya was very active and normal one day and the next not walking and

losingg bladder control. We had no clue what was going on and neither did

the doctors until after she died. All of her organs shut down, she stopped

breathing and died in less than 2 months. I understand how overwhelming it

is to lose a child so quickly to a disease you never heard of or understand.

After Samya died, I became so desperate to learn all I could about this

disgusting disease for the sake of Leanna. The UMDF foundation was my main

most helpful source. You can contact them and they are so willing to help.

Their website is www.umdf.org My second most helful source was this support

group. The knowledge from these parents is immense and the willingness to

help profound. I turn to them whenever I need advice or even have a stupid

question. I will keep you in my prayers. I cannot even imagine the grief you

are feeling. I only lost one child, not 2 and so soon. I am so sorry for

your loss. Please feel free to contact me if you need support, By any

chance, were your children diagnosed as far as mutation or form of mito?

Were they dignosed before they lost organ function? Did thewy have any

symptoms throughout life, and if so, what kind?

God bless,

Please visit my daughter's website to get more information if you like. I do

realize that sometimes visiting memorial websites of other children after

having lost your own is just too much.

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

with same disease.

Samya's Memorial Site: www.Samya.org

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

NEW TO MITO DISEASE

MY NAME IS DEANNA AND I HAVE LOST 2 CHILDREN AGES 12 AND 13 TO

MITOCHONDRIAL DISEASE IN THE LAST 9 MONTHS. MY CHILDREN WERE TWINS. I

LOST MY SON THEN LOST MY DAUGHTER 9 MONTHS LATER. THESE CHILDREN WERE

ACTIVE CHILDREN THEN ONE DAY THERE ORGANS STARTED SHUTTING DOWN. I

REALLY DONT UNDERSTAND WHAT IS GOING ON WITH THIS DISEASE. IF ANYONE

COULD HELP ME UNDERSTAND PLEASE HELP. MY DAUGHTERS ARE 17 AND 15 AND

THEY JUST STARTED SHOWING SYMPTOMS AND WERE DIAGNOSED WITH THE

DISEASE. WE ARE JUST OVERWHELMED WITH ALL THIS. MY SON WAS PLAYING

FOOTBALL ONE DAY AND ON LIFESUPPORT THE NEXT. MY DAUGHTER WAS A

CHEERLEADER AND VERY ACTIVE. SHE WAS FINE ONE DAY AND HER BLADDER

STOPPED WORKING THE NEXT. THEN SHE WAS TRACHED AND SO WAS HE BECAUSE

OF SIEZURES AND APNEA. THEN IT WAS DOWNHILL FROM THERE. THEN LAST

WEEK MY 17 YEAR OLD STOP BREATHING AND IS HAVEING APNEA AROUNG 30 TO

40 TIMES A DAY. ITS ONLY BEEN 3 MONTHS SINCE WE LOST THE LAST

ONE. PLEASE HELP

Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Deanna,

My heart hurts so much for you. I too am praying for you and your

family.

Do you know what kind of Mito. Disease your children have?

Shirley, mom to and Jordan, Mito Myopathy

> DEANNA MY HEART AND PRAYERS GO OUT TOO YOU. I COULDNT IMAGINE THE PAIN

> YOU ARE GOING THROUGH RIGHT NOW ALL I CAN DO IS SEND MY PRAYERS TOO

> YOU AND YOUR FAMILY. GOD BLESS YOU JENNIE

>

> heavenlytwins1990 heavenlytwins1990@...> wrote:

> MY NAME IS DEANNA AND I HAVE LOST 2 CHILDREN AGES 12 AND 13 TO

> MITOCHONDRIAL DISEASE IN THE LAST 9 MONTHS. MY CHILDREN WERE TWINS. I

> LOST MY SON THEN LOST MY DAUGHTER 9 MONTHS LATER. THESE CHILDREN WERE

> ACTIVE CHILDREN THEN ONE DAY THERE ORGANS STARTED SHUTTING DOWN. I

> REALLY DONT UNDERSTAND WHAT IS GOING ON WITH THIS DISEASE. IF ANYONE

> COULD HELP ME UNDERSTAND PLEASE HELP. MY DAUGHTERS ARE 17 AND 15 AND

> THEY JUST STARTED SHOWING SYMPTOMS AND WERE DIAGNOSED WITH THE

> DISEASE. WE ARE JUST OVERWHELMED WITH ALL THIS. MY SON WAS PLAYING

> FOOTBALL ONE DAY AND ON LIFESUPPORT THE NEXT. MY DAUGHTER WAS A

> CHEERLEADER AND VERY ACTIVE. SHE WAS FINE ONE DAY AND HER BLADDER

> STOPPED WORKING THE NEXT. THEN SHE WAS TRACHED AND SO WAS HE BECAUSE

> OF SIEZURES AND APNEA. THEN IT WAS DOWNHILL FROM THERE. THEN LAST

> WEEK MY 17 YEAR OLD STOP BREATHING AND IS HAVEING APNEA AROUNG 30 TO

> 40 TIMES A DAY. ITS ONLY BEEN 3 MONTHS SINCE WE LOST THE LAST

> ONE.        PLEASE HELP

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>

[Guest guest]

I cannot imagine the pain you must feel. I have two very affected children and also have an older child starting to go downhill as well. The thought of losing one let a lone two in such a short time is overwhelming to consider. I am sorry there is not much I can say to help you, but please know we are here to talk with. If there are specific questions you have, we could help you better, maybe to understand better. Mito can attack in so many ways. In some it happens as it did in your two children, in others the progression happens much slower. I am sure your 17 year old must be frightened as well. My 16 year old just recently had a stroke and it was the first we could point to, although we think he might have had a previous one due to some issues he had before it. My four year old is dealing with Mito plus CNS brain vasculitis. Each day with her is a true blessing as we know it could potentially be her last. Our 8 month old has had two strokes and is dealing with the aftermath of them plus the metabolic problems Mito kids face on a daily basis. We do not know the future and it can be so scary to face. I wish I could say more to comfort you. One thing I am wondering is what type of Mito they have and if you have a Metabolic specialist following your girls. Where do you live? Can you tell us more about your girls and if there are specific questions maybe we can help you more. Darla: mommy to Asenath (4), Zipporrah (8 months), Luke (16), and the other 6 kiddos NEW TO MITO DISEASE MY NAME IS DEANNA AND I HAVE LOST 2 CHILDREN AGES 12 AND 13 TO MITOCHONDRIAL DISEASE IN THE LAST 9 MONTHS. MY CHILDREN WERE TWINS. I LOST MY SON THEN LOST MY DAUGHTER 9 MONTHS LATER. THESE CHILDREN WERE ACTIVE CHILDREN THEN ONE DAY THERE ORGANS STARTED SHUTTING DOWN. I REALLY DONT UNDERSTAND WHAT IS GOING ON WITH THIS DISEASE. IF ANYONE COULD HELP ME UNDERSTAND PLEASE HELP. MY DAUGHTERS ARE 17 AND 15 AND THEY JUST STARTED SHOWING SYMPTOMS AND WERE DIAGNOSED WITH THE DISEASE. WE ARE JUST OVERWHELMED WITH ALL THIS. MY SON WAS PLAYING FOOTBALL ONE DAY AND ON LIFESUPPORT THE NEXT. MY DAUGHTER WAS A CHEERLEADER AND VERY ACTIVE. SHE WAS FINE ONE DAY AND HER BLADDER STOPPED WORKING THE NEXT. THEN SHE WAS TRACHED AND SO WAS HE BECAUSE OF SIEZURES AND APNEA. THEN IT WAS DOWNHILL FROM THERE. THEN LAST WEEK MY 17 YEAR OLD STOP BREATHING AND IS HAVEING APNEA AROUNG 30 TO 40 TIMES A DAY. ITS ONLY BEEN 3 MONTHS SINCE WE LOST THE LAST ONE. PLEASE HELP

[Guest guest]

Deanna,

My heart, thoughts, prayers and vibes go out to you and to your family.

We are a family with eight kids who are traveling the mito road. Many of my

kids had some issues (PDD, ADD, ADHD, GI, etc.) but nothing that was

supposed to be life threatening. Many of them were active as you describe

your own children. Life has changed drastically for some of them.

Although I don't frequently post to the list, it has been a wonderful source

of information and has kept me sane.

Read all you can and arm yourself with knowledge. Many times I find that I

need to count on my own gut feelings about things and not a docs opinion.

Hugs,

Marie

NEW TO MITO DISEASE

MY NAME IS DEANNA AND I HAVE LOST 2 CHILDREN AGES 12 AND 13 TO

MITOCHONDRIAL DISEASE IN THE LAST 9 MONTHS. MY CHILDREN WERE TWINS. I

LOST MY SON THEN LOST MY DAUGHTER 9 MONTHS LATER. THESE CHILDREN WERE

ACTIVE CHILDREN THEN ONE DAY THERE ORGANS STARTED SHUTTING DOWN. I

REALLY DONT UNDERSTAND WHAT IS GOING ON WITH THIS DISEASE. IF ANYONE

COULD HELP ME UNDERSTAND PLEASE HELP. MY DAUGHTERS ARE 17 AND 15 AND

THEY JUST STARTED SHOWING SYMPTOMS AND WERE DIAGNOSED WITH THE

DISEASE. WE ARE JUST OVERWHELMED WITH ALL THIS. MY SON WAS PLAYING

FOOTBALL ONE DAY AND ON LIFESUPPORT THE NEXT. MY DAUGHTER WAS A

CHEERLEADER AND VERY ACTIVE. SHE WAS FINE ONE DAY AND HER BLADDER

STOPPED WORKING THE NEXT. THEN SHE WAS TRACHED AND SO WAS HE BECAUSE

OF SIEZURES AND APNEA. THEN IT WAS DOWNHILL FROM THERE. THEN LAST

WEEK MY 17 YEAR OLD STOP BREATHING AND IS HAVEING APNEA AROUNG 30 TO

40 TIMES A DAY. ITS ONLY BEEN 3 MONTHS SINCE WE LOST THE LAST

ONE. PLEASE HELP

Please contact mito-owner with any problems or questions.

[Guest guest]

Deanna,

First of all let me say, take a step back and a nice deep breath. My heart hurts for you right now. I can hear in your words your utter panic, and can remember feeling the same as you. I have lost 3 children to the Mito disease. and 2 nieces as well. I have 3 children who are currently living with Mito, all three presenting differently and vary in severity. I myself also have Mito as well. If I can help you in anyway, please feel free to ask. It is hard to help and give information without specific questions as Mito is so different for everyone dealing with it. So all that to say please ask questions, if one person can't answer it, it has been my experience on this list that there will be someone here who can or at least try to. I know someone else has recommended you read and get yourself up to speed with Mito which I fully recommend as well, but I also understand that it is sometimes easier to ask questions of knowledgeable people first before you start tackling the medical jargon. Everyone here on this list are caring people and are dealing with Mito so please don't be embarrassed to vent your feelings or ask questions you might think are personal. We have all at one time or another vented big time on here or asked questions that most would say you asked another person that? LOL You are in my prayers and thoughts and please feel free to e-mail me off list if you are more comfortable asking questions. I am not an expert, just a Mito mommy who has been one for a little over 14 years now. If you don't know about UMDF (United Mitochondrial Disease Foundation) You might check out their site at WWW.UMDF.ORG

HUGS!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)