Re: our genetic counseling

[Guest guest]

-----How much is one person

>> supose to take?

>>

>> and Complex II-III

>>

, I saw this line and could SO identify with it? I've asked myself

this over and over for years along with all the guilt questions and the

meaning of life questions until finally for the last few weeks I've been SO

busy surviving and trying to help the kids survive that I got even too

overwhelmed (busy, exhausted, etc) that I didn't even have the energy left

to complain or worry anymore. It crossed my mind that I wasn't sure if that

was a good or a bad sign, but part of me was glad as I'm sick of doing both.

I watched the hurricane news and thought of you and your family. Hope all

went OK as you struggled thru that mess.

It seems everyone on this list has more than any one person should be asked

to handle, how do so many people " do it " and so many like Trish, etc. go on

with a smile on their face and a song in their heart? S.

[Guest guest]

-----How much is one person

>> supose to take?

>>

>> and Complex II-III

>>

, I saw this line and could SO identify with it? I've asked myself

this over and over for years along with all the guilt questions and the

meaning of life questions until finally for the last few weeks I've been SO

busy surviving and trying to help the kids survive that I got even too

overwhelmed (busy, exhausted, etc) that I didn't even have the energy left

to complain or worry anymore. It crossed my mind that I wasn't sure if that

was a good or a bad sign, but part of me was glad as I'm sick of doing both.

I watched the hurricane news and thought of you and your family. Hope all

went OK as you struggled thru that mess.

It seems everyone on this list has more than any one person should be asked

to handle, how do so many people " do it " and so many like Trish, etc. go on

with a smile on their face and a song in their heart? S.

[Guest guest]

, I am truly sorry that the diagnosis seems so bad. It must have been

very hard for you to have gone through that by yourself.

> The disease they believe Orion had (they are still running tests to

>confirm it) is called Familial Erythrophagocytic Lymphohistiocytosis.

Before you conclude this is the answer, remember that they still have to

confirm it. Additionally, unless they have a genetic location for the bad

genes which firmly make it FEL, you can't tell if it's a familial version or

a single spontaneous failure of the cell. And since they can only document

one other case (which might have had the family history to support such a

determination) unless you have a family tree with more of the same, it's

pretty hard to tell if it's " familial " anything.

Go slowly. Get really good information before you make life choices and

especially before you tell family members who might make life choices based

on that information. Certainly no one would ever want a child to suffer the

way your poor Orion did, but neither would I wish a whole family tree to go

childless to eliminate such a possibility unless it is absolutely certain.

With only one case, it would seem to me that no one could tell you if Orion

perhaps had a particularly difficult case and other children might not.

Think of the loss to the world if there were never another child born with

Downs Syndrome. And there is brilliant art and poetry from

schizophrenics -- should that be stopped along with those who might have the

illness? And what of the loss of the other 75% who would be born and now

won't? Be sure that you know with certainty that the only choice is the one

you've been presented.

> Although Orion's post-mortum is not finished yet, they have received

a

>number of test results confirming that although Orion did have a

>mitochondrial disorder, it was not his primary " problem " ...

I think that there is just a semantics issue - alot of " diseases " coincide

with " mito disease " and more and more are being labeled as " mito diseases "

like alzheimers, etc. So is it the chicken or the egg -- does one cause the

other or is one a symptom. Guess it depends on what you call things.

Hope things get better for you from here.

KAthy

[Guest guest]

,

Please know that I am so sorry to read the results of your genetic

counseling. I have felt great support from your participation on this list

and in the chat room. I know you were hopeful of having more children. You

will probably get many replys to this post, but right now, I know you are in

mourning again.

Please accept my heartfelt sympathy for your continued grief. I'm not

totally sure that the advice to have no other children would be what I would

have given you, as I think that is a personal choice since the percentage is

25%. I wish genetic counselors did not do this.

Take the time you need to absorbe this news and go wherever you need to go

for comfort. Perhaps that is with family. I'm sure your husband needs

comfort too. Maybe you can find it together.

When you have done this, please come back to this list. We have all grown

to love you and Orion.

With Love,

Alice

our genetic counseling

>From: Jaz739@...

>

>Hi everyone;

> I hope this letter finds all of you well... We just returned from

our

>genetic counseling, and I must admit, it was not what we expected. Or I

>should say, we did not hear anything close to what we expected...

> As I have told you all, Orion had a mitochondrial disorder. This is

>what all tests and symptoms while he was alive indicated. We went to the

>counseling today hoping to find out what " type " of mito disorder Orion had,

>as well as where genetics fit into all of this... and our chances of

having

>another child with mito.

> Although Orion's post-mortum is not finished yet, they have received

a

>number of test results confirming that although Orion did have a

>mitochondrial disorder, it was not his primary " problem " ... Rather, it was

a

>symptom of an extremely rare disease they now feel our son had...

> The disease they believe Orion had (they are still running tests to

>confirm it) is called Familial Erythrophagocytic Lymphohistiocytosis.

During

>post-mortum tests, they noticed that Orion had a huge amount of white blood

>cells in his system (more specifically, around his brain). Upon further

>study, they discovered that the white blood cells had red blood cells and

>tissue cells (specifically, brain) inside of them. His white blood cells

>were eating away his red blood cells and brain. They were attacking his

>body, as if his body itself were a disease... His own little body had

turned

>against him. They also noticed that Orion's spleen was inflamed.

> This disease is extremely rare (1 in every 1 million births).

However,

>in every other documented case but one, the liver and spleen were enlarged.

>Orion's liver was fine, and his spleen had only some irritation. His brain

>was extremely inflamed. In one other case documented, in 1977, the child's

>white blood cells attacked not only the red blood cells, but also the

Central

>Nervous System. So there has only been one other documented case in

history

>of what they believe Orion had.

> They have tried treating this disease like leukemia, with bone marrow

>transplants, but this treatment was unsuccessful. There is no chance of

>survival. This disease is autosomal recessive, so we have a 25 % chance of

>it happening again. However, because of the severity of it, and the amount

>of suffering the child endures, they do not recommend we take the chance.

>They as of yet do not know what the gene " looks like " , so there is no way

to

>test prenatally or test a baby to see if they have it.

> Orion's mitochondria were made " sick " by this disease. So his

>mitochondrial disorder was caused by this.

> Again, this is not yet confirmed, but strongly suspected. I guess I

am

>still kind of in shock... I went in there expecting to hear " mito " , and

>while I do hate this disease called mito for all it put Orion through (as

>well as others), I knew that at least our future children, if also

affected,

>would have a chance. Now I know that any child we have with Familial

>Erythrophagocytic Lymphohistiocytosis will not have a chance...

> Thank you all for listening. I know most of you have your own

>problems... I guess I just needed to vent for a few minutes... I haven't

>even told my family yet, and what it means for them...

>

>Orion's Mommy

>

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

[Guest guest]

Won't you much rather have that one in a million chance to win a lottery. I

am sorry your Orion had to suffer so much, I am also sorry that they

recommend no future children. I pray and mourn for Orion and your future

children.

Amy (mom to (21mos), possible mito,possible seizures, global

developmental delay, microcepaly, GI reflux and GI delay in emptying, CVI, ?

Hearing, and the best smile and giggle)

our genetic counseling

>From: Jaz739@...

>

>Hi everyone;

> I hope this letter finds all of you well... We just returned from

our

>genetic counseling, and I must admit, it was not what we expected. Or I

>should say, we did not hear anything close to what we expected...

> As I have told you all, Orion had a mitochondrial disorder. This is

>what all tests and symptoms while he was alive indicated. We went to the

>counseling today hoping to find out what " type " of mito disorder Orion had,

>as well as where genetics fit into all of this... and our chances of

having

>another child with mito.

> Although Orion's post-mortum is not finished yet, they have received

a

>number of test results confirming that although Orion did have a

>mitochondrial disorder, it was not his primary " problem " ... Rather, it was

a

>symptom of an extremely rare disease they now feel our son had...

> The disease they believe Orion had (they are still running tests to

>confirm it) is called Familial Erythrophagocytic Lymphohistiocytosis.

During

>post-mortum tests, they noticed that Orion had a huge amount of white blood

>cells in his system (more specifically, around his brain). Upon further

>study, they discovered that the white blood cells had red blood cells and

>tissue cells (specifically, brain) inside of them. His white blood cells

>were eating away his red blood cells and brain. They were attacking his

>body, as if his body itself were a disease... His own little body had

turned

>against him. They also noticed that Orion's spleen was inflamed.

> This disease is extremely rare (1 in every 1 million births).

However,

>in every other documented case but one, the liver and spleen were enlarged.

>Orion's liver was fine, and his spleen had only some irritation. His brain

>was extremely inflamed. In one other case documented, in 1977, the child's

>white blood cells attacked not only the red blood cells, but also the

Central

>Nervous System. So there has only been one other documented case in

history

>of what they believe Orion had.

> They have tried treating this disease like leukemia, with bone marrow

>transplants, but this treatment was unsuccessful. There is no chance of

>survival. This disease is autosomal recessive, so we have a 25 % chance of

>it happening again. However, because of the severity of it, and the amount

>of suffering the child endures, they do not recommend we take the chance.

>They as of yet do not know what the gene " looks like " , so there is no way

to

>test prenatally or test a baby to see if they have it.

> Orion's mitochondria were made " sick " by this disease. So his

>mitochondrial disorder was caused by this.

> Again, this is not yet confirmed, but strongly suspected. I guess I

am

>still kind of in shock... I went in there expecting to hear " mito " , and

>while I do hate this disease called mito for all it put Orion through (as

>well as others), I knew that at least our future children, if also

affected,

>would have a chance. Now I know that any child we have with Familial

>Erythrophagocytic Lymphohistiocytosis will not have a chance...

> Thank you all for listening. I know most of you have your own

>problems... I guess I just needed to vent for a few minutes... I haven't

>even told my family yet, and what it means for them...

>

>Orion's Mommy

>

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

[Guest guest]

Won't you much rather have that one in a million chance to win a lottery. I

am sorry your Orion had to suffer so much, I am also sorry that they

recommend no future children. I pray and mourn for Orion and your future

children.

Amy (mom to (21mos), possible mito,possible seizures, global

developmental delay, microcepaly, GI reflux and GI delay in emptying, CVI, ?

Hearing, and the best smile and giggle)

our genetic counseling

>From: Jaz739@...

>

>Hi everyone;

> I hope this letter finds all of you well... We just returned from

our

>genetic counseling, and I must admit, it was not what we expected. Or I

>should say, we did not hear anything close to what we expected...

> As I have told you all, Orion had a mitochondrial disorder. This is

>what all tests and symptoms while he was alive indicated. We went to the

>counseling today hoping to find out what " type " of mito disorder Orion had,

>as well as where genetics fit into all of this... and our chances of

having

>another child with mito.

> Although Orion's post-mortum is not finished yet, they have received

a

>number of test results confirming that although Orion did have a

>mitochondrial disorder, it was not his primary " problem " ... Rather, it was

a

>symptom of an extremely rare disease they now feel our son had...

> The disease they believe Orion had (they are still running tests to

>confirm it) is called Familial Erythrophagocytic Lymphohistiocytosis.

During

>post-mortum tests, they noticed that Orion had a huge amount of white blood

>cells in his system (more specifically, around his brain). Upon further

>study, they discovered that the white blood cells had red blood cells and

>tissue cells (specifically, brain) inside of them. His white blood cells

>were eating away his red blood cells and brain. They were attacking his

>body, as if his body itself were a disease... His own little body had

turned

>against him. They also noticed that Orion's spleen was inflamed.

> This disease is extremely rare (1 in every 1 million births).

However,

>in every other documented case but one, the liver and spleen were enlarged.

>Orion's liver was fine, and his spleen had only some irritation. His brain

>was extremely inflamed. In one other case documented, in 1977, the child's

>white blood cells attacked not only the red blood cells, but also the

Central

>Nervous System. So there has only been one other documented case in

history

>of what they believe Orion had.

> They have tried treating this disease like leukemia, with bone marrow

>transplants, but this treatment was unsuccessful. There is no chance of

>survival. This disease is autosomal recessive, so we have a 25 % chance of

>it happening again. However, because of the severity of it, and the amount

>of suffering the child endures, they do not recommend we take the chance.

>They as of yet do not know what the gene " looks like " , so there is no way

to

>test prenatally or test a baby to see if they have it.

> Orion's mitochondria were made " sick " by this disease. So his

>mitochondrial disorder was caused by this.

> Again, this is not yet confirmed, but strongly suspected. I guess I

am

>still kind of in shock... I went in there expecting to hear " mito " , and

>while I do hate this disease called mito for all it put Orion through (as

>well as others), I knew that at least our future children, if also

affected,

>would have a chance. Now I know that any child we have with Familial

>Erythrophagocytic Lymphohistiocytosis will not have a chance...

> Thank you all for listening. I know most of you have your own

>problems... I guess I just needed to vent for a few minutes... I haven't

>even told my family yet, and what it means for them...

>

>Orion's Mommy

>

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

[Guest guest]

Won't you much rather have that one in a million chance to win a lottery. I

am sorry your Orion had to suffer so much, I am also sorry that they

recommend no future children. I pray and mourn for Orion and your future

children.

Amy (mom to (21mos), possible mito,possible seizures, global

developmental delay, microcepaly, GI reflux and GI delay in emptying, CVI, ?

Hearing, and the best smile and giggle)

our genetic counseling

>From: Jaz739@...

>

>Hi everyone;

> I hope this letter finds all of you well... We just returned from

our

>genetic counseling, and I must admit, it was not what we expected. Or I

>should say, we did not hear anything close to what we expected...

> As I have told you all, Orion had a mitochondrial disorder. This is

>what all tests and symptoms while he was alive indicated. We went to the

>counseling today hoping to find out what " type " of mito disorder Orion had,

>as well as where genetics fit into all of this... and our chances of

having

>another child with mito.

> Although Orion's post-mortum is not finished yet, they have received

a

>number of test results confirming that although Orion did have a

>mitochondrial disorder, it was not his primary " problem " ... Rather, it was

a

>symptom of an extremely rare disease they now feel our son had...

> The disease they believe Orion had (they are still running tests to

>confirm it) is called Familial Erythrophagocytic Lymphohistiocytosis.

During

>post-mortum tests, they noticed that Orion had a huge amount of white blood

>cells in his system (more specifically, around his brain). Upon further

>study, they discovered that the white blood cells had red blood cells and

>tissue cells (specifically, brain) inside of them. His white blood cells

>were eating away his red blood cells and brain. They were attacking his

>body, as if his body itself were a disease... His own little body had

turned

>against him. They also noticed that Orion's spleen was inflamed.

> This disease is extremely rare (1 in every 1 million births).

However,

>in every other documented case but one, the liver and spleen were enlarged.

>Orion's liver was fine, and his spleen had only some irritation. His brain

>was extremely inflamed. In one other case documented, in 1977, the child's

>white blood cells attacked not only the red blood cells, but also the

Central

>Nervous System. So there has only been one other documented case in

history

>of what they believe Orion had.

> They have tried treating this disease like leukemia, with bone marrow

>transplants, but this treatment was unsuccessful. There is no chance of

>survival. This disease is autosomal recessive, so we have a 25 % chance of

>it happening again. However, because of the severity of it, and the amount

>of suffering the child endures, they do not recommend we take the chance.

>They as of yet do not know what the gene " looks like " , so there is no way

to

>test prenatally or test a baby to see if they have it.

> Orion's mitochondria were made " sick " by this disease. So his

>mitochondrial disorder was caused by this.

> Again, this is not yet confirmed, but strongly suspected. I guess I

am

>still kind of in shock... I went in there expecting to hear " mito " , and

>while I do hate this disease called mito for all it put Orion through (as

>well as others), I knew that at least our future children, if also

affected,

>would have a chance. Now I know that any child we have with Familial

>Erythrophagocytic Lymphohistiocytosis will not have a chance...

> Thank you all for listening. I know most of you have your own

>problems... I guess I just needed to vent for a few minutes... I haven't

>even told my family yet, and what it means for them...

>

>Orion's Mommy

>

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

[Guest guest]

Dear ,

It was with tremendous sorrow that I read of your news regarding the cause of

Orion's death. This must be such a tremendous blow to you, and I want you to

know that my thoughts and prayers are with you and your family right now. I

know the heart-wrenching decision before you of whether or not to have more

children, and of the risks involved with your decision either way. We, too,

went through that process after Lexi was diagnosed, and I still sometimes

question, but am finding my peace with our family life as it is for today..

Words are woefully inadequate at times like these, so I'll close just with

saying that my heart goes out to you. Please feel free to " vent " ANY TIME!!

ruth

[Guest guest]

Dear ,

It was with tremendous sorrow that I read of your news regarding the cause of

Orion's death. This must be such a tremendous blow to you, and I want you to

know that my thoughts and prayers are with you and your family right now. I

know the heart-wrenching decision before you of whether or not to have more

children, and of the risks involved with your decision either way. We, too,

went through that process after Lexi was diagnosed, and I still sometimes

question, but am finding my peace with our family life as it is for today..

Words are woefully inadequate at times like these, so I'll close just with

saying that my heart goes out to you. Please feel free to " vent " ANY TIME!!

ruth

[Guest guest]

Dear ,

It was with tremendous sorrow that I read of your news regarding the cause of

Orion's death. This must be such a tremendous blow to you, and I want you to

know that my thoughts and prayers are with you and your family right now. I

know the heart-wrenching decision before you of whether or not to have more

children, and of the risks involved with your decision either way. We, too,

went through that process after Lexi was diagnosed, and I still sometimes

question, but am finding my peace with our family life as it is for today..

Words are woefully inadequate at times like these, so I'll close just with

saying that my heart goes out to you. Please feel free to " vent " ANY TIME!!

ruth

[Guest guest]

:

Before you make the decision not to have anymore children please take some

time to absorb the information that you were given and also to wait for final

results. Then I think you and your husband need to sit down and talk about

things. I am not sure that all genetic counselors wouyld remomend against

having a child when then is a 1 in 4 chance of having another effected child

because on the flip side you have a 3 in 4 chance of having a healthy child.

I know that the information that you were given is very hard to adjust and I

am not sure how well I would have handled it BUT I hope that you get the

answers that you need and then are able to make an educated and informaed

decision and then do not let anyone question your decision either way.

Love.

Sharon

[Guest guest]

,

Just wanted to let you know that I (along with everybody on

this list I'm sure) have been thinking about you. I agree

with the others who have written that while this is not a

time to hide from your feelings, it is also not the time to

make rock-solid decisions about your future babies. And

frankly, I think the decision to have another child should

be between you and Orion's daddy, not the decision of the

genetic counselor. You are the one who has to live with the

decision, they don't. I just don't want to see you lose

hope...

, Mom to Adelaine and Baby?

--

The 's

Ann Arbor, MI

j-cooper@...

http://www.mich.com/~jaj

[Guest guest]

i just wanted to thank everyone who has kept us in your thoughts and prayers.

chris and i haven't really talked about the things we have learned the past

couple of days; maybe we just need time to let it all sink in. all this has

scared me so much.

julia

orion's mommy

september 18, 1998 to february 3, 1999

happy birthday, orion!

[Guest guest]

i just wanted to thank everyone who has kept us in your thoughts and prayers.

chris and i haven't really talked about the things we have learned the past

couple of days; maybe we just need time to let it all sink in. all this has

scared me so much.

julia

orion's mommy

september 18, 1998 to february 3, 1999

happy birthday, orion!

[Guest guest]

,

I have been thinking about you and your husband as I know that you are

nearing Orion's birthday. 's b-day is Thursday and when I think of

what that day means to me----I can only imagine how hard it will be for you.

I am also so sorry to read about youe genetic results. Please know that I

will be praying for you, your husband and Orion today. Peace to you all,

and Complex II-III

[Guest guest]

,

I have been thinking about you and your husband as I know that you are

nearing Orion's birthday. 's b-day is Thursday and when I think of

what that day means to me----I can only imagine how hard it will be for you.

I am also so sorry to read about youe genetic results. Please know that I

will be praying for you, your husband and Orion today. Peace to you all,

and Complex II-III

[Guest guest]

In a message dated 99-09-18 20:23:23 EDT, you write:

<< ,

I have been thinking about you and your husband as I know that you are

nearing Orion's birthday. 's b-day is Thursday and when I think of

what that day means to me----I can only imagine how hard it will be for you.

I am also so sorry to read about youe genetic results. Please know that I

will be praying for you, your husband and Orion today. Peace to you all,

and Complex II-III

>>

;

I just wanted to say thank you.

Orion's Mommy

[Guest guest]

(Orion's Mom) -

Ditto on some of the other comments. Our neurologist (after genetics

counsel) told us we were foolish to try and have more kids, but yet we have

two other healthy kids. Our first baby is 6 and perfect. Second pregnancy

was a miscarriage early on. Third baby is perfectly normal at 4. Fourth

baby is Kennedy. So I understand the 25% rule, and the counseling is

intended to give you the facts, but it's your and your partner's decision.

Would we do it again? No, but only because we have two healthy kids

already. Would we do it again if we had no kids? Tough call, probably

would try it but no way to know without being there.

For what it's worth - here's a story. A friend of ours who has had a really

tough time with similar hereditary problems and losing kids tried his

method - sounds wild but it has worked for them. They were torn over trying

again or not. They were afraid to adopt kids in the U.S. because the

inbred legal experts have decided to play God with taking kids away from

families that raised them to give them to even more idiotic parents. (Can

you tell I am biased?) So they didn't want to adopt a child and worry about

losing the child to a buffoon on the bench......just to avoid worrying about

delivering an afflicted child. So they researched international adoptions.

They spend a grand on an attorney, a couple grand on airline tickets, flew

to Paraguay and adopted the cutest little girl you have ever seen. Two

years later, they have three of these little rascals. The short end to the

story was that they wanted to adopt kids and then make the decision. So

they were no longer deciding whether to be alone or not......they were just

deciding whether to risk delivering children of their own when they already

had healthy kids. Given that we fully understood their risks and emotions,

we were touched by the answer they arrived at.

Hope the story at least gives you a thought. China, Bosnia, Russia, and

Guatemala are also excellent and inexpensive adoption countries.

Best wishes in your journey....

Kennedy's Dad

Mito CIII deficiency, vent, g-tube

[Guest guest]

(Orion's Mom) -

Ditto on some of the other comments. Our neurologist (after genetics

counsel) told us we were foolish to try and have more kids, but yet we have

two other healthy kids. Our first baby is 6 and perfect. Second pregnancy

was a miscarriage early on. Third baby is perfectly normal at 4. Fourth

baby is Kennedy. So I understand the 25% rule, and the counseling is

intended to give you the facts, but it's your and your partner's decision.

Would we do it again? No, but only because we have two healthy kids

already. Would we do it again if we had no kids? Tough call, probably

would try it but no way to know without being there.

For what it's worth - here's a story. A friend of ours who has had a really

tough time with similar hereditary problems and losing kids tried his

method - sounds wild but it has worked for them. They were torn over trying

again or not. They were afraid to adopt kids in the U.S. because the

inbred legal experts have decided to play God with taking kids away from

families that raised them to give them to even more idiotic parents. (Can

you tell I am biased?) So they didn't want to adopt a child and worry about

losing the child to a buffoon on the bench......just to avoid worrying about

delivering an afflicted child. So they researched international adoptions.

They spend a grand on an attorney, a couple grand on airline tickets, flew

to Paraguay and adopted the cutest little girl you have ever seen. Two

years later, they have three of these little rascals. The short end to the

story was that they wanted to adopt kids and then make the decision. So

they were no longer deciding whether to be alone or not......they were just

deciding whether to risk delivering children of their own when they already

had healthy kids. Given that we fully understood their risks and emotions,

we were touched by the answer they arrived at.

Hope the story at least gives you a thought. China, Bosnia, Russia, and

Guatemala are also excellent and inexpensive adoption countries.

Best wishes in your journey....

Kennedy's Dad

Mito CIII deficiency, vent, g-tube

[Guest guest]

(Orion's Mom) -

Ditto on some of the other comments. Our neurologist (after genetics

counsel) told us we were foolish to try and have more kids, but yet we have

two other healthy kids. Our first baby is 6 and perfect. Second pregnancy

was a miscarriage early on. Third baby is perfectly normal at 4. Fourth

baby is Kennedy. So I understand the 25% rule, and the counseling is

intended to give you the facts, but it's your and your partner's decision.

Would we do it again? No, but only because we have two healthy kids

already. Would we do it again if we had no kids? Tough call, probably

would try it but no way to know without being there.

For what it's worth - here's a story. A friend of ours who has had a really

tough time with similar hereditary problems and losing kids tried his

method - sounds wild but it has worked for them. They were torn over trying

again or not. They were afraid to adopt kids in the U.S. because the

inbred legal experts have decided to play God with taking kids away from

families that raised them to give them to even more idiotic parents. (Can

you tell I am biased?) So they didn't want to adopt a child and worry about

losing the child to a buffoon on the bench......just to avoid worrying about

delivering an afflicted child. So they researched international adoptions.

They spend a grand on an attorney, a couple grand on airline tickets, flew

to Paraguay and adopted the cutest little girl you have ever seen. Two

years later, they have three of these little rascals. The short end to the

story was that they wanted to adopt kids and then make the decision. So

they were no longer deciding whether to be alone or not......they were just

deciding whether to risk delivering children of their own when they already

had healthy kids. Given that we fully understood their risks and emotions,

we were touched by the answer they arrived at.

Hope the story at least gives you a thought. China, Bosnia, Russia, and

Guatemala are also excellent and inexpensive adoption countries.

Best wishes in your journey....

Kennedy's Dad

Mito CIII deficiency, vent, g-tube

[Guest guest]

-

I just noted that was a CII and CIII diagnosis - our Kennedy is

CIII - we run across so few of them that we try to gather as much data as we

can. Would you please share your story and 's

characteristics/condition? We understand if you don't wish to.

Hairston

Kennedy's Dad

Mito CIII deficiency, vent, g-tube

Re: our genetic counseling

> From: Goldenfam4@...

>

> ,

>

> I have been thinking about you and your husband as I know that you are

> nearing Orion's birthday. 's b-day is Thursday and when I think of

> what that day means to me----I can only imagine how hard it will be for

you.

> I am also so sorry to read about youe genetic results. Please know that I

> will be praying for you, your husband and Orion today. Peace to you all,

> and Complex II-III

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

-

I just noted that was a CII and CIII diagnosis - our Kennedy is

CIII - we run across so few of them that we try to gather as much data as we

can. Would you please share your story and 's

characteristics/condition? We understand if you don't wish to.

Hairston

Kennedy's Dad

Mito CIII deficiency, vent, g-tube

Re: our genetic counseling

> From: Goldenfam4@...

>

> ,

>

> I have been thinking about you and your husband as I know that you are

> nearing Orion's birthday. 's b-day is Thursday and when I think of

> what that day means to me----I can only imagine how hard it will be for

you.

> I am also so sorry to read about youe genetic results. Please know that I

> will be praying for you, your husband and Orion today. Peace to you all,

> and Complex II-III

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

-

I just noted that was a CII and CIII diagnosis - our Kennedy is

CIII - we run across so few of them that we try to gather as much data as we

can. Would you please share your story and 's

characteristics/condition? We understand if you don't wish to.

Hairston

Kennedy's Dad

Mito CIII deficiency, vent, g-tube

Re: our genetic counseling

> From: Goldenfam4@...

>

> ,

>

> I have been thinking about you and your husband as I know that you are

> nearing Orion's birthday. 's b-day is Thursday and when I think of

> what that day means to me----I can only imagine how hard it will be for

you.

> I am also so sorry to read about youe genetic results. Please know that I

> will be praying for you, your husband and Orion today. Peace to you all,

> and Complex II-III

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

I will be happy to email with 's story--I will attempt to do this

later today or Monday. It has been a tough few weeks with Hospitalizations,

Hurricane evacuations and now my Mother-in-law------How much is one person

supose to take?

But I will make this a priority----as I always do when it comes to my mito

family

and Complex II-III

[Guest guest]

Thx, will be waiting.

Hairston

Re: our genetic counseling

> From: Goldenfam4@...

>

> I will be happy to email with 's story--I will attempt to do

this

> later today or Monday. It has been a tough few weeks with

Hospitalizations,

> Hurricane evacuations and now my Mother-in-law------How much is one person

> supose to take?

> But I will make this a priority----as I always do when it comes to my

mito

> family

>

> and Complex II-III

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>