New member

Posted August 16, 1999 · August 16, 1999

,

I know that we have talked about Orion in the chat room a couple of times,

but it's so nice to hear more about him. Thank you for sharing his

beautiful story.

Terri

>From: Jaz739@...

>

>Hello, my name is . My son, Orion, passed away on February 3, 1999,

>from a neurodegenerative disorder, caused by a mitochondrial cytopathy. He

>was 4 1/2 months old. Here is our story:

Posted August 17, 1999 · August 17, 1999

, thank you so much for your story. I am convinced that there is nothing

to compare with being the parent of a child with a mitochondrial disorder.

Anything that I've ever gone through, as a patient, doesn't hold a candle to

what you, the parents, go through.

Much love,

the Elder

Posted August 17, 1999 · August 17, 1999

Hi ,

I agree, that was nice to hear about Orion. I cried as I read your

story.

Sue ( & Jack)-worn out parents to the greatest kids on earth--

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-7: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>

> ,

>

> I know that we have talked about Orion in the chat room a couple of times,

> but it's so nice to hear more about him. Thank you for sharing his

> beautiful story.

Posted August 17, 1999 · August 17, 1999

Dear

Thank you so much for introducing yourself and Orion to this list. I

am so sorry that you lost your son so quickly, but I am glad you have

joined this community to give and receive information and support.

Your love for Orion shone through every word you wrote, as did your

heartbreak. I have also lost a child to this disease, and I want you

to know my prayers and thoughts will be with you and Orion.

Lynne

(Mummy of Ally, forever 4, and Angus, 7, Complex I, III and IV

defects)

---------------------------

Posted August 17, 1999 · August 17, 1999

,

I want to thank you for writing your story. I read every word and cried. My

daughter began with seizures at 10 months of age. She was diagnosed with

Complex 1 defect at 4 years. She is now 11 and is very sick. My wife and I

are at the awkward place of waiting for her to die. Not a day goes by that

I don't think " please make me sick so she can be well " . I would gladly

trade places with her, because she is such a sweet angel, and does not

deserve what she has been through. I appreciate your honesty, and your

faith.

I really love your quote at the end because I can say that too. " Some

people only dream of angels; we held one in our arms! " I hope you don't

mind if I use that in my daughter's eulogy. I don't know what else to say,

I just feel so sad for you and your husband and Orion; and my Tyler. Please

let me know if I can do anything to help. Now I need to go get another box

of tissues.

Grady Nash

http://www.erols.com/gnash

new member

> From: Jaz739@...

>

> Hello, my name is . My son, Orion, passed away on February 3, 1999,

> from a neurodegenerative disorder, caused by a mitochondrial cytopathy.

He

> was 4 1/2 months old. Here is our story:

> Orion was born on September 18, 1998, at 22 inches and weighing 9

> lbs 7 oz. He was the most beautiful baby I'd ever seen (of course). From

> the time he was born, I cherished him more than words can say. He had a

> perfect little personality, too-- when he was mad, he would shake his

fist

> and hollar... we used to say he was cursing. When he was hungry, he'd

yell,

> " MOM-MOM-MOM " , as if he knew he was calling me. I took him to the doctor

> about once a week ( " Oh no! He sneezed! " )-- typical new mother, right?

> On November 19, 1998, (Orion's father) found him not

breathing.

> He was able to revive him using CPR, and we rushed Orion to the hospital.

He

> seemed to be fine-- no obvious reason why he would have stopped breathing.

> My son was admitted for observation, and things went downhill from there.

> Out of nowhere, our precious son began seizing repeatedly. He was given

> several different seizure medications, to no avail. Finally, at about 4

am,

> he was transferred to the ICU. Once there, after the meds had been

increased

> several times, it seemed he had finally stabilized. and I were

given

> parent rooms, and exhausted, we each fell into restless sleep.

> The next day was relatively uneventful. Orion had stopped seizing,

> although he was unconscious. The nurses explained to us that his body was

> simply tired from all the seizing the night before. We went to bed that

> night feeling hopeful that Orion would be transferred to " the floor "

soon.

> When we entered his room the next morning, a CPR mask and bag were

> lying next to Orion in the bassinet. His nurse came in, and explained to

us

> that Orion had stopped breathing several times during the night. We were

> shocked and confused... The rest of the day we spent watching helplessly

as

> our son stopped breathing over and over again, having to be revived by

nurses

> each time. Finally, we were told that Orion had to be intubated, because

the

> apneic spells were becoming more and more frequent, and it was harder to

> revive him each time.

> Orion was on the ventilator for nine days. During that time, I had

a

> Catholic priest come and baptize him, as well as clergymen of all faiths

come

> and pray over him. I spent long hours in the chapel, praying to God to

> please not take my baby boy away from me. Family members came to see him,

> many for the first time. I was always talking to Orion-- I was sure he

could

> hear me. I knew it in my heart.

> One morning, I entered his room to see that he was breathing on his

> own! They had taken him off of the ventilator early that morning. One of

> the first things I did was go to the chapel to thank God for sparing my

son.

> Things seemed to get better from there. Soon Orion learned to drink from

a

> bottle again. I was able to finally hold him again, after what seemed

like

> years since he'd been in my arms. He even got his wonderful little temper

> back!

> The nurses had noticed that Orion didn't seem to be following things

> with his eyes as he should. An optholomologist saw him and diagnosed him

> with optic disc hypoplasia, underdevelopment of his optic nerves. This

meant

> he was at least partially blind. I begged them to give him my optic

nerves,

> so that he could see. I would gladly sacrifice my eyesight if it meant a

> better life for my son. This, unfortunately, was not possible. There was

> also a possibility that Orion's brain could have been damaged, from the

lack

> of oxygen to his brain. The hospital put us in contact with ChildLink, a

> company that could help Orion get the special care he needed for his

> disabilities. We were given an apnea monitor, and trained in CPR.

Finally,

> after a three-week hospital stay, Orion was allowed to go home.

> Two weeks later, on Christmas Eve, Orion began acting strangely. He

> wouldn't eat, and had vomited a large amount the night before. He also

was

> very lethargic, and hard to wake up. Thinking he had a stomach flu, and

> worried about dehydration, we took him to the ER. He was seen immediately

> because of his age, and several tests were run. Everything came back

normal

> except for his hemoglobin count. It was only 5.5 (it should have been

around

> 12). The doctors explained to us that there could be two possible reasons

> for this: it could be either from all the blood they'd had to take for

tests

> during his first stay, or he could be bleeding internally. They thought

it

> was the former, but took him for a CT scan, just to be safe. The results

> were shocking: Orion's brain had shrunk 2 cm around since his last CT

scan,

> and was hemorrhaging as a result.

> Over the next few days, numerous tests were run, and finally we were

> given a tentative diagnosis: our son had a mitochondrial cytopathy. He

was

> dying, and there was nothing anyone could do about it.

> I had not been in the chapel at all yet during this hospital stay...

> But I went there now. I was furious at God; how could He do this to my

son?

> I prayed that He'd take me instead, and spare my son. I was angry, and He

> was the only one I felt I could blame. My son had strokes, brain atrophy,

> and he was in pain! Orion was in pain and I couldn't help him. And he

was

> going to die. My beautiful, precious Orion would not live to see his

first

> birthday. The holidays he had seen were all spent in the hospital:

> Thanksgiving, Christmas, New Year's. The presents were still under the

> tree...

> Orion would have to be given about 10 different medications at

numerous

> times during the day, all in an effort to keep him as comfortable as

> possible. Since he couldn't possibly take them orally, he'd have to be

given

> them through a tube going through his nose to his stomach (an NG tube). I

> had to learn how to place the tube, and administer his meds. I remember

> standing there, with tears running down my face, as a nurse held him down

so

> I could place his tube. I would cry so hard, as I whispered, " I'm so

sorry,

> Orion " ... and know that he didn't understand that I wasn't trying to hurt

> him. He would fight so hard to push me away! He would look at me with

his

> big blue eyes full of tears, wondering why his mommy was doing this...

> I never got to take him to all the places I wanted him to see. I

never

> got to see him walk or talk, or get his first little teeth... but my son

was

> my best friend. We watched TV together (he liked hockey), I read stories

to

> him, we played... All of the time, the knowledge that he would soon be

gone

> loomed in the back of my mind. I was lucky-- I could concentrate on the

time

> I did have with him, instead of dwelling on what I knew would happen in

the

> near future.

> On February 3, 1999, at the age of 4 1/2 months, Orion died. His

> father had taken him off of his monitor to rock him to sleep. When Chris

> reattached the wires, the alarm immediately sounded. He desperately tried

to

> save him, as did the paramedics and doctors at the hospital, but Orion was

> gone. His little heart had stopped.

> My soul was torn in half that day. Each day is spent going from one

> emotion to another, as I await the day when we will at last be reunited,

and

> my soul will be whole again. I know that day will come.

> We chose to have an open-casket viewing for Orion. Instead of a

suit,

> I had him dressed in his favorite Philadelphia Flyers outfit, with his

Flyers

> sleeper/bag over it. Orion used to love when I put that little bag on

him;

> it was warm and snuggly, with a warm hood. He would always fall asleep

right

> away in that.

> Shortly after Orion died, a friend sent me the poem " Pennies From

> Heaven " . I read it and thought it was nice, but at the time, didn't

really

> think twice about it. Until I started finding pennies everywhere. In my

> shoes, under my clothes, at work, in the street... I told my family about

> that poem, and now my sister gets almost as excited as I get when I find a

> penny. I know some people don't believe me, but I don't care... I know

> Orion sends me little messages in the pennies he tosses down. He sends

his

> love.

> I started a fund in Orion's name, with the help of the hospital, to

go

> toward mitochondrial research. A cure needs to be found for these

disorders;

> other children like my son need to be saved. I know Orion would want

that.

>

> Conicello

> Mommy to Orion

> September 18, 1998 to February 3, 1999

> " Some people only dream of angels; we held one in our arms! "

>

> ---------------------------

Posted August 17, 1999 · August 17, 1999

,

I want to thank you for writing your story. I read every word and cried. My

daughter began with seizures at 10 months of age. She was diagnosed with

Complex 1 defect at 4 years. She is now 11 and is very sick. My wife and I

are at the awkward place of waiting for her to die. Not a day goes by that

I don't think " please make me sick so she can be well " . I would gladly

trade places with her, because she is such a sweet angel, and does not

deserve what she has been through. I appreciate your honesty, and your

faith.

I really love your quote at the end because I can say that too. " Some

people only dream of angels; we held one in our arms! " I hope you don't

mind if I use that in my daughter's eulogy. I don't know what else to say,

I just feel so sad for you and your husband and Orion; and my Tyler. Please

let me know if I can do anything to help. Now I need to go get another box

of tissues.

Grady Nash

http://www.erols.com/gnash

new member

> From: Jaz739@...

>

> Hello, my name is . My son, Orion, passed away on February 3, 1999,

> from a neurodegenerative disorder, caused by a mitochondrial cytopathy.

He

> was 4 1/2 months old. Here is our story:

> Orion was born on September 18, 1998, at 22 inches and weighing 9

> lbs 7 oz. He was the most beautiful baby I'd ever seen (of course). From

> the time he was born, I cherished him more than words can say. He had a

> perfect little personality, too-- when he was mad, he would shake his

fist

> and hollar... we used to say he was cursing. When he was hungry, he'd

yell,

> " MOM-MOM-MOM " , as if he knew he was calling me. I took him to the doctor

> about once a week ( " Oh no! He sneezed! " )-- typical new mother, right?

> On November 19, 1998, (Orion's father) found him not

breathing.

> He was able to revive him using CPR, and we rushed Orion to the hospital.

He

> seemed to be fine-- no obvious reason why he would have stopped breathing.

> My son was admitted for observation, and things went downhill from there.

> Out of nowhere, our precious son began seizing repeatedly. He was given

> several different seizure medications, to no avail. Finally, at about 4

am,

> he was transferred to the ICU. Once there, after the meds had been

increased

> several times, it seemed he had finally stabilized. and I were

given

> parent rooms, and exhausted, we each fell into restless sleep.

> The next day was relatively uneventful. Orion had stopped seizing,

> although he was unconscious. The nurses explained to us that his body was

> simply tired from all the seizing the night before. We went to bed that

> night feeling hopeful that Orion would be transferred to " the floor "

soon.

> When we entered his room the next morning, a CPR mask and bag were

> lying next to Orion in the bassinet. His nurse came in, and explained to

us

> that Orion had stopped breathing several times during the night. We were

> shocked and confused... The rest of the day we spent watching helplessly

as

> our son stopped breathing over and over again, having to be revived by

nurses

> each time. Finally, we were told that Orion had to be intubated, because

the

> apneic spells were becoming more and more frequent, and it was harder to

> revive him each time.

> Orion was on the ventilator for nine days. During that time, I had

a

> Catholic priest come and baptize him, as well as clergymen of all faiths

come

> and pray over him. I spent long hours in the chapel, praying to God to

> please not take my baby boy away from me. Family members came to see him,

> many for the first time. I was always talking to Orion-- I was sure he

could

> hear me. I knew it in my heart.

> One morning, I entered his room to see that he was breathing on his

> own! They had taken him off of the ventilator early that morning. One of

> the first things I did was go to the chapel to thank God for sparing my

son.

> Things seemed to get better from there. Soon Orion learned to drink from

a

> bottle again. I was able to finally hold him again, after what seemed

like

> years since he'd been in my arms. He even got his wonderful little temper

> back!

> The nurses had noticed that Orion didn't seem to be following things

> with his eyes as he should. An optholomologist saw him and diagnosed him

> with optic disc hypoplasia, underdevelopment of his optic nerves. This

meant

> he was at least partially blind. I begged them to give him my optic

nerves,

> so that he could see. I would gladly sacrifice my eyesight if it meant a

> better life for my son. This, unfortunately, was not possible. There was

> also a possibility that Orion's brain could have been damaged, from the

lack

> of oxygen to his brain. The hospital put us in contact with ChildLink, a

> company that could help Orion get the special care he needed for his

> disabilities. We were given an apnea monitor, and trained in CPR.

Finally,

> after a three-week hospital stay, Orion was allowed to go home.

> Two weeks later, on Christmas Eve, Orion began acting strangely. He

> wouldn't eat, and had vomited a large amount the night before. He also

was

> very lethargic, and hard to wake up. Thinking he had a stomach flu, and

> worried about dehydration, we took him to the ER. He was seen immediately

> because of his age, and several tests were run. Everything came back

normal

> except for his hemoglobin count. It was only 5.5 (it should have been

around

> 12). The doctors explained to us that there could be two possible reasons

> for this: it could be either from all the blood they'd had to take for

tests

> during his first stay, or he could be bleeding internally. They thought

it

> was the former, but took him for a CT scan, just to be safe. The results

> were shocking: Orion's brain had shrunk 2 cm around since his last CT

scan,

> and was hemorrhaging as a result.

> Over the next few days, numerous tests were run, and finally we were

> given a tentative diagnosis: our son had a mitochondrial cytopathy. He

was

> dying, and there was nothing anyone could do about it.

> I had not been in the chapel at all yet during this hospital stay...

> But I went there now. I was furious at God; how could He do this to my

son?

> I prayed that He'd take me instead, and spare my son. I was angry, and He

> was the only one I felt I could blame. My son had strokes, brain atrophy,

> and he was in pain! Orion was in pain and I couldn't help him. And he

was

> going to die. My beautiful, precious Orion would not live to see his

first

> birthday. The holidays he had seen were all spent in the hospital:

> Thanksgiving, Christmas, New Year's. The presents were still under the

> tree...

> Orion would have to be given about 10 different medications at

numerous

> times during the day, all in an effort to keep him as comfortable as

> possible. Since he couldn't possibly take them orally, he'd have to be

given

> them through a tube going through his nose to his stomach (an NG tube). I

> had to learn how to place the tube, and administer his meds. I remember

> standing there, with tears running down my face, as a nurse held him down

so

> I could place his tube. I would cry so hard, as I whispered, " I'm so

sorry,

> Orion " ... and know that he didn't understand that I wasn't trying to hurt

> him. He would fight so hard to push me away! He would look at me with

his

> big blue eyes full of tears, wondering why his mommy was doing this...

> I never got to take him to all the places I wanted him to see. I

never

> got to see him walk or talk, or get his first little teeth... but my son

was

> my best friend. We watched TV together (he liked hockey), I read stories

to

> him, we played... All of the time, the knowledge that he would soon be

gone

> loomed in the back of my mind. I was lucky-- I could concentrate on the

time

> I did have with him, instead of dwelling on what I knew would happen in

the

> near future.

> On February 3, 1999, at the age of 4 1/2 months, Orion died. His

> father had taken him off of his monitor to rock him to sleep. When Chris

> reattached the wires, the alarm immediately sounded. He desperately tried

to

> save him, as did the paramedics and doctors at the hospital, but Orion was

> gone. His little heart had stopped.

> My soul was torn in half that day. Each day is spent going from one

> emotion to another, as I await the day when we will at last be reunited,

and

> my soul will be whole again. I know that day will come.

> We chose to have an open-casket viewing for Orion. Instead of a

suit,

> I had him dressed in his favorite Philadelphia Flyers outfit, with his

Flyers

> sleeper/bag over it. Orion used to love when I put that little bag on

him;

> it was warm and snuggly, with a warm hood. He would always fall asleep

right

> away in that.

> Shortly after Orion died, a friend sent me the poem " Pennies From

> Heaven " . I read it and thought it was nice, but at the time, didn't

really

> think twice about it. Until I started finding pennies everywhere. In my

> shoes, under my clothes, at work, in the street... I told my family about

> that poem, and now my sister gets almost as excited as I get when I find a

> penny. I know some people don't believe me, but I don't care... I know

> Orion sends me little messages in the pennies he tosses down. He sends

his

> love.

> I started a fund in Orion's name, with the help of the hospital, to

go

> toward mitochondrial research. A cure needs to be found for these

disorders;

> other children like my son need to be saved. I know Orion would want

that.

>

> Conicello

> Mommy to Orion

> September 18, 1998 to February 3, 1999

> " Some people only dream of angels; we held one in our arms! "

>

> ---------------------------

Posted August 17, 1999 · August 17, 1999

,

I want to thank you for writing your story. I read every word and cried. My

daughter began with seizures at 10 months of age. She was diagnosed with

Complex 1 defect at 4 years. She is now 11 and is very sick. My wife and I

are at the awkward place of waiting for her to die. Not a day goes by that

I don't think " please make me sick so she can be well " . I would gladly

trade places with her, because she is such a sweet angel, and does not

deserve what she has been through. I appreciate your honesty, and your

faith.

I really love your quote at the end because I can say that too. " Some

people only dream of angels; we held one in our arms! " I hope you don't

mind if I use that in my daughter's eulogy. I don't know what else to say,

I just feel so sad for you and your husband and Orion; and my Tyler. Please

let me know if I can do anything to help. Now I need to go get another box

of tissues.

Grady Nash

http://www.erols.com/gnash

new member

> From: Jaz739@...

>

> Hello, my name is . My son, Orion, passed away on February 3, 1999,

> from a neurodegenerative disorder, caused by a mitochondrial cytopathy.

He

> was 4 1/2 months old. Here is our story:

> Orion was born on September 18, 1998, at 22 inches and weighing 9

> lbs 7 oz. He was the most beautiful baby I'd ever seen (of course). From

> the time he was born, I cherished him more than words can say. He had a

> perfect little personality, too-- when he was mad, he would shake his

fist

> and hollar... we used to say he was cursing. When he was hungry, he'd

yell,

> " MOM-MOM-MOM " , as if he knew he was calling me. I took him to the doctor

> about once a week ( " Oh no! He sneezed! " )-- typical new mother, right?

> On November 19, 1998, (Orion's father) found him not

breathing.

> He was able to revive him using CPR, and we rushed Orion to the hospital.

He

> seemed to be fine-- no obvious reason why he would have stopped breathing.

> My son was admitted for observation, and things went downhill from there.

> Out of nowhere, our precious son began seizing repeatedly. He was given

> several different seizure medications, to no avail. Finally, at about 4

am,

> he was transferred to the ICU. Once there, after the meds had been

increased

> several times, it seemed he had finally stabilized. and I were

given

> parent rooms, and exhausted, we each fell into restless sleep.

> The next day was relatively uneventful. Orion had stopped seizing,

> although he was unconscious. The nurses explained to us that his body was

> simply tired from all the seizing the night before. We went to bed that

> night feeling hopeful that Orion would be transferred to " the floor "

soon.

> When we entered his room the next morning, a CPR mask and bag were

> lying next to Orion in the bassinet. His nurse came in, and explained to

us

> that Orion had stopped breathing several times during the night. We were

> shocked and confused... The rest of the day we spent watching helplessly

as

> our son stopped breathing over and over again, having to be revived by

nurses

> each time. Finally, we were told that Orion had to be intubated, because

the

> apneic spells were becoming more and more frequent, and it was harder to

> revive him each time.

> Orion was on the ventilator for nine days. During that time, I had

a

> Catholic priest come and baptize him, as well as clergymen of all faiths

come

> and pray over him. I spent long hours in the chapel, praying to God to

> please not take my baby boy away from me. Family members came to see him,

> many for the first time. I was always talking to Orion-- I was sure he

could

> hear me. I knew it in my heart.

> One morning, I entered his room to see that he was breathing on his

> own! They had taken him off of the ventilator early that morning. One of

> the first things I did was go to the chapel to thank God for sparing my

son.

> Things seemed to get better from there. Soon Orion learned to drink from

a

> bottle again. I was able to finally hold him again, after what seemed

like

> years since he'd been in my arms. He even got his wonderful little temper

> back!

> The nurses had noticed that Orion didn't seem to be following things

> with his eyes as he should. An optholomologist saw him and diagnosed him

> with optic disc hypoplasia, underdevelopment of his optic nerves. This

meant

> he was at least partially blind. I begged them to give him my optic

nerves,

> so that he could see. I would gladly sacrifice my eyesight if it meant a

> better life for my son. This, unfortunately, was not possible. There was

> also a possibility that Orion's brain could have been damaged, from the

lack

> of oxygen to his brain. The hospital put us in contact with ChildLink, a

> company that could help Orion get the special care he needed for his

> disabilities. We were given an apnea monitor, and trained in CPR.

Finally,

> after a three-week hospital stay, Orion was allowed to go home.

> Two weeks later, on Christmas Eve, Orion began acting strangely. He

> wouldn't eat, and had vomited a large amount the night before. He also

was

> very lethargic, and hard to wake up. Thinking he had a stomach flu, and

> worried about dehydration, we took him to the ER. He was seen immediately

> because of his age, and several tests were run. Everything came back

normal

> except for his hemoglobin count. It was only 5.5 (it should have been

around

> 12). The doctors explained to us that there could be two possible reasons

> for this: it could be either from all the blood they'd had to take for

tests

> during his first stay, or he could be bleeding internally. They thought

it

> was the former, but took him for a CT scan, just to be safe. The results

> were shocking: Orion's brain had shrunk 2 cm around since his last CT

scan,

> and was hemorrhaging as a result.

> Over the next few days, numerous tests were run, and finally we were

> given a tentative diagnosis: our son had a mitochondrial cytopathy. He

was

> dying, and there was nothing anyone could do about it.

> I had not been in the chapel at all yet during this hospital stay...

> But I went there now. I was furious at God; how could He do this to my

son?

> I prayed that He'd take me instead, and spare my son. I was angry, and He

> was the only one I felt I could blame. My son had strokes, brain atrophy,

> and he was in pain! Orion was in pain and I couldn't help him. And he

was

> going to die. My beautiful, precious Orion would not live to see his

first

> birthday. The holidays he had seen were all spent in the hospital:

> Thanksgiving, Christmas, New Year's. The presents were still under the

> tree...

> Orion would have to be given about 10 different medications at

numerous

> times during the day, all in an effort to keep him as comfortable as

> possible. Since he couldn't possibly take them orally, he'd have to be

given

> them through a tube going through his nose to his stomach (an NG tube). I

> had to learn how to place the tube, and administer his meds. I remember

> standing there, with tears running down my face, as a nurse held him down

so

> I could place his tube. I would cry so hard, as I whispered, " I'm so

sorry,

> Orion " ... and know that he didn't understand that I wasn't trying to hurt

> him. He would fight so hard to push me away! He would look at me with

his

> big blue eyes full of tears, wondering why his mommy was doing this...

> I never got to take him to all the places I wanted him to see. I

never

> got to see him walk or talk, or get his first little teeth... but my son

was

> my best friend. We watched TV together (he liked hockey), I read stories

to

> him, we played... All of the time, the knowledge that he would soon be

gone

> loomed in the back of my mind. I was lucky-- I could concentrate on the

time

> I did have with him, instead of dwelling on what I knew would happen in

the

> near future.

> On February 3, 1999, at the age of 4 1/2 months, Orion died. His

> father had taken him off of his monitor to rock him to sleep. When Chris

> reattached the wires, the alarm immediately sounded. He desperately tried

to

> save him, as did the paramedics and doctors at the hospital, but Orion was

> gone. His little heart had stopped.

> My soul was torn in half that day. Each day is spent going from one

> emotion to another, as I await the day when we will at last be reunited,

and

> my soul will be whole again. I know that day will come.

> We chose to have an open-casket viewing for Orion. Instead of a

suit,

> I had him dressed in his favorite Philadelphia Flyers outfit, with his

Flyers

> sleeper/bag over it. Orion used to love when I put that little bag on

him;

> it was warm and snuggly, with a warm hood. He would always fall asleep

right

> away in that.

> Shortly after Orion died, a friend sent me the poem " Pennies From

> Heaven " . I read it and thought it was nice, but at the time, didn't

really

> think twice about it. Until I started finding pennies everywhere. In my

> shoes, under my clothes, at work, in the street... I told my family about

> that poem, and now my sister gets almost as excited as I get when I find a

> penny. I know some people don't believe me, but I don't care... I know

> Orion sends me little messages in the pennies he tosses down. He sends

his

> love.

> I started a fund in Orion's name, with the help of the hospital, to

go

> toward mitochondrial research. A cure needs to be found for these

disorders;

> other children like my son need to be saved. I know Orion would want

that.

>

> Conicello

> Mommy to Orion

> September 18, 1998 to February 3, 1999

> " Some people only dream of angels; we held one in our arms! "

>

> ---------------------------

Posted August 17, 1999 · August 17, 1999

,

Thank You so much for sharing your story about your beautiful little angel

with us. It touched me very deeply and I will be thinking of you this

September. My son was born Sept 23, 1998 and has just received a

confirmation of Mitochondrial Disease. Today I will hold him a little closer

and tighter.

and

Posted August 20, 1999 · August 20, 1999

Hi ,I wish we had gotten to know each other sooner, and I am sorry fpr

your loss.You are a truly inspirational person to have kept a positive and

spiritual outlook,I think it would be very easy to be angry and bitter over

losing your son.My son is thankfully still with us,we have almost and truly

lost him many times.I never believed in " miracles " or even religion per se,

but the last serious setback my son had, landed him in the icu seizing,

blind, deaf and brain damaged.That was 6 months ago.He is now seeing,

hearing,talking and learning to walk.He is 2 now.We are expecting another

baby and people often ask me why?????aren't you terrified of having another

Jonah?I just tell them if I am blessed enough to have another child as

loving and wonderful as Jonah, I am a lucky person as these mito kids of

ours are true angels.Thank you for sharing your story with us.TTFN

>From: Jaz739@...

>Reply-To: Mitoonelist

>To: mitoonelist

>Subject: new member

>Date: Mon, 16 Aug 1999 20:54:37 EDT

>

>From: Jaz739@...

>

>Hello, my name is . My son, Orion, passed away on February 3, 1999,

>from a neurodegenerative disorder, caused by a mitochondrial cytopathy. He

>was 4 1/2 months old. Here is our story:

> Orion was born on September 18, 1998, at 22 inches and weighing 9

>lbs 7 oz. He was the most beautiful baby I'd ever seen (of course). From

>the time he was born, I cherished him more than words can say. He had a

>perfect little personality, too-- when he was mad, he would shake his fist

>and hollar... we used to say he was cursing. When he was hungry, he'd

>yell,

> " MOM-MOM-MOM " , as if he knew he was calling me. I took him to the doctor

>about once a week ( " Oh no! He sneezed! " )-- typical new mother, right?

> On November 19, 1998, (Orion's father) found him not

>breathing.

>He was able to revive him using CPR, and we rushed Orion to the hospital.

>He

>seemed to be fine-- no obvious reason why he would have stopped breathing.

>My son was admitted for observation, and things went downhill from there.

>Out of nowhere, our precious son began seizing repeatedly. He was given

>several different seizure medications, to no avail. Finally, at about 4

>am,

>he was transferred to the ICU. Once there, after the meds had been

>increased

>several times, it seemed he had finally stabilized. and I were given

>parent rooms, and exhausted, we each fell into restless sleep.

> The next day was relatively uneventful. Orion had stopped seizing,

>although he was unconscious. The nurses explained to us that his body was

>simply tired from all the seizing the night before. We went to bed that

>night feeling hopeful that Orion would be transferred to " the floor " soon.

> When we entered his room the next morning, a CPR mask and bag were

>lying next to Orion in the bassinet. His nurse came in, and explained to

>us

>that Orion had stopped breathing several times during the night. We were

>shocked and confused... The rest of the day we spent watching helplessly

>as

>our son stopped breathing over and over again, having to be revived by

>nurses

>each time. Finally, we were told that Orion had to be intubated, because

>the

>apneic spells were becoming more and more frequent, and it was harder to

>revive him each time.

> Orion was on the ventilator for nine days. During that time, I had

>a

>Catholic priest come and baptize him, as well as clergymen of all faiths

>come

>and pray over him. I spent long hours in the chapel, praying to God to

>please not take my baby boy away from me. Family members came to see him,

>many for the first time. I was always talking to Orion-- I was sure he

>could

>hear me. I knew it in my heart.

> One morning, I entered his room to see that he was breathing on his

>own! They had taken him off of the ventilator early that morning. One of

>the first things I did was go to the chapel to thank God for sparing my

>son.

>Things seemed to get better from there. Soon Orion learned to drink from a

>bottle again. I was able to finally hold him again, after what seemed like

>years since he'd been in my arms. He even got his wonderful little temper

>back!

> The nurses had noticed that Orion didn't seem to be following things

>with his eyes as he should. An optholomologist saw him and diagnosed him

>with optic disc hypoplasia, underdevelopment of his optic nerves. This

>meant

>he was at least partially blind. I begged them to give him my optic

>nerves,

>so that he could see. I would gladly sacrifice my eyesight if it meant a

>better life for my son. This, unfortunately, was not possible. There was

>also a possibility that Orion's brain could have been damaged, from the

>lack

>of oxygen to his brain. The hospital put us in contact with ChildLink, a

>company that could help Orion get the special care he needed for his

>disabilities. We were given an apnea monitor, and trained in CPR.

>Finally,

>after a three-week hospital stay, Orion was allowed to go home.

> Two weeks later, on Christmas Eve, Orion began acting strangely. He

>wouldn't eat, and had vomited a large amount the night before. He also was

>very lethargic, and hard to wake up. Thinking he had a stomach flu, and

>worried about dehydration, we took him to the ER. He was seen immediately

>because of his age, and several tests were run. Everything came back

>normal

>except for his hemoglobin count. It was only 5.5 (it should have been

>around

>12). The doctors explained to us that there could be two possible reasons

>for this: it could be either from all the blood they'd had to take for

>tests

>during his first stay, or he could be bleeding internally. They thought it

>was the former, but took him for a CT scan, just to be safe. The results

>were shocking: Orion's brain had shrunk 2 cm around since his last CT

>scan,

>and was hemorrhaging as a result.

> Over the next few days, numerous tests were run, and finally we were

>given a tentative diagnosis: our son had a mitochondrial cytopathy. He

>was

>dying, and there was nothing anyone could do about it.

> I had not been in the chapel at all yet during this hospital stay...

>But I went there now. I was furious at God; how could He do this to my

>son?

>I prayed that He'd take me instead, and spare my son. I was angry, and He

>was the only one I felt I could blame. My son had strokes, brain atrophy,

>and he was in pain! Orion was in pain and I couldn't help him. And he was

>going to die. My beautiful, precious Orion would not live to see his first

>birthday. The holidays he had seen were all spent in the hospital:

>Thanksgiving, Christmas, New Year's. The presents were still under the

>tree...

> Orion would have to be given about 10 different medications at

>numerous

>times during the day, all in an effort to keep him as comfortable as

>possible. Since he couldn't possibly take them orally, he'd have to be

>given

>them through a tube going through his nose to his stomach (an NG tube). I

>had to learn how to place the tube, and administer his meds. I remember

>standing there, with tears running down my face, as a nurse held him down

>so

>I could place his tube. I would cry so hard, as I whispered, " I'm so

>sorry,

>Orion " ... and know that he didn't understand that I wasn't trying to hurt

>him. He would fight so hard to push me away! He would look at me with his

>big blue eyes full of tears, wondering why his mommy was doing this...

> I never got to take him to all the places I wanted him to see. I

>never

>got to see him walk or talk, or get his first little teeth... but my son

>was

>my best friend. We watched TV together (he liked hockey), I read stories

>to

>him, we played... All of the time, the knowledge that he would soon be

>gone

>loomed in the back of my mind. I was lucky-- I could concentrate on the

>time

>I did have with him, instead of dwelling on what I knew would happen in the

>near future.

> On February 3, 1999, at the age of 4 1/2 months, Orion died. His

>father had taken him off of his monitor to rock him to sleep. When Chris

>reattached the wires, the alarm immediately sounded. He desperately tried

>to

>save him, as did the paramedics and doctors at the hospital, but Orion was

>gone. His little heart had stopped.

> My soul was torn in half that day. Each day is spent going from one

>emotion to another, as I await the day when we will at last be reunited,

>and

>my soul will be whole again. I know that day will come.

> We chose to have an open-casket viewing for Orion. Instead of a

>suit,

>I had him dressed in his favorite Philadelphia Flyers outfit, with his

>Flyers

>sleeper/bag over it. Orion used to love when I put that little bag on him;

>it was warm and snuggly, with a warm hood. He would always fall asleep

>right

>away in that.

> Shortly after Orion died, a friend sent me the poem " Pennies From

>Heaven " . I read it and thought it was nice, but at the time, didn't really

>think twice about it. Until I started finding pennies everywhere. In my

>shoes, under my clothes, at work, in the street... I told my family about

>that poem, and now my sister gets almost as excited as I get when I find a

>penny. I know some people don't believe me, but I don't care... I know

>Orion sends me little messages in the pennies he tosses down. He sends his

>love.

> I started a fund in Orion's name, with the help of the hospital, to

>go

>toward mitochondrial research. A cure needs to be found for these

>disorders;

>other children like my son need to be saved. I know Orion would want that.

>

> Conicello

>Mommy to Orion

>September 18, 1998 to February 3, 1999

> " Some people only dream of angels; we held one in our arms! "

>

>---------------------------

Posted November 5, 2002 · November 5, 2002

Ask Me,

Hello! I'm Gena, since Oct 2000 I have lost 84 pounds. I highly

recommend the books by Dr Phil and Bob Green. They do not say to diet.

They help you deal with why you over eat, why you get over weight. They

both give you tools to get control. I know some of the things they say.

Dr Phil says you don't get rid of an addiction, you replace it. Find

something else to divert your attention. Writing in a journal is good,

drink some water, brush your teeth, exercise, coming here and reading

old posts, ect. Hope that helps.

Gena

> I am addicted to eating, I have only recently discovered this and now

> I don't know what to do, I think, eat, sleep, and breath my next

> meal. I weight 310 now and remember promising myself I would never

> get this way. So here I am. Scared out of my mind and clueless.

>

Posted November 5, 2002 · November 5, 2002

Ask Me,

Hello! I'm Gena, since Oct 2000 I have lost 84 pounds. I highly

recommend the books by Dr Phil and Bob Green. They do not say to diet.

They help you deal with why you over eat, why you get over weight. They

both give you tools to get control. I know some of the things they say.

Dr Phil says you don't get rid of an addiction, you replace it. Find

something else to divert your attention. Writing in a journal is good,

drink some water, brush your teeth, exercise, coming here and reading

old posts, ect. Hope that helps.

Gena

> I am addicted to eating, I have only recently discovered this and now

> I don't know what to do, I think, eat, sleep, and breath my next

> meal. I weight 310 now and remember promising myself I would never

> get this way. So here I am. Scared out of my mind and clueless.

>

Posted November 7, 2002 · November 7, 2002

On 11/7/02 6:43 AM, " weightlossbuddies2 "

<weightlossbuddies2 > wrote:

> I do belong to a gym though, but my trainer was so not

> into helping me, I got discouraged and ashamed. I have been trying

> to find some sort of support group, but you have to be anorexic or

> bullemic (sp?).

Can you use the cardio machines at the gym without the trainer? I do at my

gym. I also use the free weights without the trainer. I bought a book that

describes how to use them. I learned about 2 exercises a week when I

started. (Go slow when learning, use weights that are easy to lift, post

and ask questions on lists like this. That way, you'll learn good form,

which is important to avoid injury.)

Good luck,

Lucia

--

lucia@...

Lisle, Illinois

Posted November 7, 2002 · November 7, 2002

On 11/7/02 6:43 AM, " weightlossbuddies2 "

<weightlossbuddies2 > wrote:

> I do belong to a gym though, but my trainer was so not

> into helping me, I got discouraged and ashamed. I have been trying

> to find some sort of support group, but you have to be anorexic or

> bullemic (sp?).

Can you use the cardio machines at the gym without the trainer? I do at my

gym. I also use the free weights without the trainer. I bought a book that

describes how to use them. I learned about 2 exercises a week when I

started. (Go slow when learning, use weights that are easy to lift, post

and ask questions on lists like this. That way, you'll learn good form,

which is important to avoid injury.)

Good luck,

Lucia

--

lucia@...

Lisle, Illinois

Posted November 15, 2002 · November 15, 2002

Vicki,

Welcome!

I am new too (this is my 2nd week) and i have found this to be one of

the most supportive group of women i've ever encountered!

Each faces their own challenges...but we are each here for the same

reason...to improve our overall health by losing weight...

i have been finding thru some soul searching since joining that i

have weird issues (psychological) regarding my weight, and have

received very kind words and support.

I wish you the best, and i really think you've come to the right

place to change your eating habits and improve your health and weight.

Caroline

> I JOINED A BUNCH OF GROUPS OVER THE PAST FEW MONTHS AND THEN LEFT A

> BUNCH BECAUSE I EITHER FELT FOOLISH BECAUSE I FAILED AT WHAT HAD

SET

> OUT TO DO, OR ELSE I FELT I DIDN'T BELONG. BUT I REALIZED

> THAT I'VE BEEN GOING ABOUT THINGS IN THE WRONG WAY SO I'M REJOINING

> SOME GROUPS, OR JOINING SOME FOR THE FIRST TIME. FOR THOSE THAT

DON'T

> KNOW ME FROM POSTING BEFORE, MY NAME IS VICKI, AND I'M 46 YEARS

OLD.

> I'M CURRENTLY 159 LBS (ON A 5'9 " FRAME) AND MY GOAL WEIGHT IS

145LBS.

> BELOW IS MY INTRO LETTER.

> Hi All,

> I thought about it a lot (me dieting again) and I realized

> I simply can't go on an all or nothing diet like I have in the

past.

> But I remembered how well I did when I lost the 105 lbs back in the

> early 80's and exactly what I did, and I'm going to do that again.

> Basically it's a modified low-carb diet. Back then I'd never heard

of

> low-carb. Anyway, my new way of eating isn't going to be a strict

> diet, but a lifetime change (like so many have reminded me to do).

> The only difference is that for the next couple of months I'm going

> to make sure all my trigger foods are out of the house. But I'll

> still eat carbs, just not nearly as much and I'm getting out of the

> sugar habit completely. My biggest problem has been my hubby buying

> all kinds of junk food and if it's in the house, then I eat my

share.

> But he says he wants to get rid of a few pounds too so no more junk

> food for the most part. As for eating more protein, I remember how

> much energy I had on the diet I was on in the 80's and it came

mostly

> from the lean protein I was eating, plus veggies. I cut out oils

> (except PAM spray), margarine, and sugar, and the only bread I ate

> was high fiber types like roman meal. And I had more energy than I

> knew what to do with. So, I'm going to try to adapt that eating

style

> once again. I lost 105 lbs in 13 months eating that way, was never

> hungry, and felt great. Maybe it's the way I should eat all the

time.

> I'm going to give it a try anyway.

> Vicki

>

> Whatever your mind can conceive and believe, it can achieve.

Posted November 15, 2002 · November 15, 2002

Vicki,

Welcome!

I am new too (this is my 2nd week) and i have found this to be one of

the most supportive group of women i've ever encountered!

Each faces their own challenges...but we are each here for the same

reason...to improve our overall health by losing weight...

i have been finding thru some soul searching since joining that i

have weird issues (psychological) regarding my weight, and have

received very kind words and support.

I wish you the best, and i really think you've come to the right

place to change your eating habits and improve your health and weight.

Caroline

> I JOINED A BUNCH OF GROUPS OVER THE PAST FEW MONTHS AND THEN LEFT A

> BUNCH BECAUSE I EITHER FELT FOOLISH BECAUSE I FAILED AT WHAT HAD

SET

> OUT TO DO, OR ELSE I FELT I DIDN'T BELONG. BUT I REALIZED

> THAT I'VE BEEN GOING ABOUT THINGS IN THE WRONG WAY SO I'M REJOINING

> SOME GROUPS, OR JOINING SOME FOR THE FIRST TIME. FOR THOSE THAT

DON'T

> KNOW ME FROM POSTING BEFORE, MY NAME IS VICKI, AND I'M 46 YEARS

OLD.

> I'M CURRENTLY 159 LBS (ON A 5'9 " FRAME) AND MY GOAL WEIGHT IS

145LBS.

> BELOW IS MY INTRO LETTER.

> Hi All,

> I thought about it a lot (me dieting again) and I realized

> I simply can't go on an all or nothing diet like I have in the

past.

> But I remembered how well I did when I lost the 105 lbs back in the

> early 80's and exactly what I did, and I'm going to do that again.

> Basically it's a modified low-carb diet. Back then I'd never heard

of

> low-carb. Anyway, my new way of eating isn't going to be a strict

> diet, but a lifetime change (like so many have reminded me to do).

> The only difference is that for the next couple of months I'm going

> to make sure all my trigger foods are out of the house. But I'll

> still eat carbs, just not nearly as much and I'm getting out of the

> sugar habit completely. My biggest problem has been my hubby buying

> all kinds of junk food and if it's in the house, then I eat my

share.

> But he says he wants to get rid of a few pounds too so no more junk

> food for the most part. As for eating more protein, I remember how

> much energy I had on the diet I was on in the 80's and it came

mostly

> from the lean protein I was eating, plus veggies. I cut out oils

> (except PAM spray), margarine, and sugar, and the only bread I ate

> was high fiber types like roman meal. And I had more energy than I

> knew what to do with. So, I'm going to try to adapt that eating

style

> once again. I lost 105 lbs in 13 months eating that way, was never

> hungry, and felt great. Maybe it's the way I should eat all the

time.

> I'm going to give it a try anyway.

> Vicki

>

> Whatever your mind can conceive and believe, it can achieve.

Posted November 15, 2002 · November 15, 2002

Welcome Vicki,

I am Gena, am 37 and have lost 84 pounds since Oct 2000. All I have

done is increased my exercise and cut portions, drink lots of water, no

pop. That's it, the basics. You are right, lifestyle is key. There is

no failure, just try to better the next day. One day at a time, make

little changes. But I have to say 159 and 5'9 " wow! That sounds pretty

good to me! I am 5'3 " and 200 still, am hoping to get to 170 and see

from there. I am big boobed and very muscular so the 120 of before kids

will not happen again for me but I'm ok with that. Muscle weighs more

than fat and burns more cals. It is what god has given me so I just try

to do the best I can with it. I look forward to getting to know you.

Gena

On Thursday, November 14, 2002, at 03:18 PM,

wrote:

> I JOINED A BUNCH OF GROUPS OVER THE PAST FEW MONTHS AND THEN LEFT A

> BUNCH BECAUSE I EITHER FELT FOOLISH BECAUSE I FAILED AT WHAT HAD SET

> OUT TO DO, OR ELSE I FELT I DIDN'T BELONG. BUT I REALIZED

> THAT I'VE BEEN GOING ABOUT THINGS IN THE WRONG WAY SO I'M REJOINING

> SOME GROUPS, OR JOINING SOME FOR THE FIRST TIME. FOR THOSE THAT DON'T

> KNOW ME FROM POSTING BEFORE, MY NAME IS VICKI, AND I'M 46 YEARS OLD.

> I'M CURRENTLY 159 LBS (ON A 5'9 " FRAME) AND MY GOAL WEIGHT IS 145LBS.

> BELOW IS MY INTRO LETTER.

> Hi All,

> I thought about it a lot (me dieting again) and I realized

> I simply can't go on an all or nothing diet like I have in the past.

> But I remembered how well I did when I lost the 105 lbs back in the

> early 80's and exactly what I did, and I'm going to do that again.

> Basically it's a modified low-carb diet. Back then I'd never heard of

> low-carb. Anyway, my new way of eating isn't going to be a strict

> diet, but a lifetime change (like so many have reminded me to do).

> The only difference is that for the next couple of months I'm going

> to make sure all my trigger foods are out of the house. But I'll

> still eat carbs, just not nearly as much and I'm getting out of the

> sugar habit completely. My biggest problem has been my hubby buying

> all kinds of junk food and if it's in the house, then I eat my share.

> But he says he wants to get rid of a few pounds too so no more junk

> food for the most part. As for eating more protein, I remember how

> much energy I had on the diet I was on in the 80's and it came mostly

> from the lean protein I was eating, plus veggies. I cut out oils

> (except PAM spray), margarine, and sugar, and the only bread I ate

> was high fiber types like roman meal. And I had more energy than I

> knew what to do with. So, I'm going to try to adapt that eating style

> once again. I lost 105 lbs in 13 months eating that way, was never

> hungry, and felt great. Maybe it's the way I should eat all the time.

> I'm going to give it a try anyway.

> Vicki

>

> Whatever your mind can conceive and believe, it can achieve.

>

Posted November 15, 2002 · November 15, 2002