Re: i am sure the question MARCUS

[Guest guest]

marcus that was beautiful (searching for a hankie!!) The only reason

I can with a clear conscious say I dontthink I could have kids knowing

I have NF2 is because I DONT HAVE ANY. I know if I did, and if I passed

this on to them or not, it wouldnt matter. I would never regret it.

In fact, I want kids! Id make a great mom. But its just not in the cards

for me. My hub has 2 sons, I have nf2, I am too scared, being a female

that it would accelerate tumor growth in me and I wouldnt be around to

raise the kid. But trurtyh be told, nothing would make me happier

than to habve a couple kids of my own, a dog, and just a normal family.

nothing would make me happier than to do this without nf2.

Marcus McCallum wrote:

OK

seems like I am left to give you an experienced parents point of view here

Dee-Ann !!Some

of you that have replied already are my friends, ( I hope you are !! )

and I want it to stay that way.You guys give me strength, I need your strength

and support! which means don't change a thing !! Anyway

I'll cut the ice with heavy statistics:1.

I have three children2.

BOY 12, Girl 10, Boy 63.

Boy with NF, Girl without, Boy with NF4.

50 / 50 spot on5.

I have known since age 9 I had something not good6.

Information on Von Recklinghausens Disease was ZERO7.

I had all children after AN surgery8.

We decided to have first child because we wanted to.9.

I have always been determined not to let NF rule my life in anyway. Many

people pass on genetic disease, most cancers are genetic. We smoke, gamble

and drink in front of our children which is PROVEN to encourage the same

in our kids, which can ruin their lives or kill them. Responsibility doesn't

stop EVER when you have kids. We

decided we would care for our first child regardless of any problems. Yes

I could have put a stop to the MADNESS then.Lets

put it this way, I would be wealthy now, travel when I feel like it, who

knows ! Instead I fall into the three kids, station wagon , mortgage

and dog category.I

was lucky in one respect being a man, I didn't have to cope with pregnancy.

Yes this really seems to be a tumour accelerator.Yes

NF2 is causing problems for my two sons.Yes

I guess in hindsight it was selfish of me to have children.Yes

we are a happy normal family, but perhaps instead of the normal wash cycle

we live in the DEEP RINSE !My

wife and I take responsibility for our children, we don't rely on support

in anyway.My

life was given a MISSION to supply as much present and long term support

as I can manage with what ever time I may have. I have created a legacy,

without me they will survive.We

do live a great life ! We go sailing together, surfing, tennis, beach holidays

and they attend a private school.I

take my son away for boating weekends.My

daughter is just so lucky not to have NF, I hope that the simple fact that

her family has NF is not held against her.My

third child is the most wonderful child a person could have. He is a natural

EVERYTHING and gives us all just so much pleasure.I

receive zilch support from my parental family, they can't cope.My

life is great !! But it seems I have been so lucky with NF.Would

I have my children all over again ? Without doubt!In

the words of another great MARCUS"

Our life is what our thoughts make it"(

Marcus Aurelius s BC ?)You

guys are lucky I am tied down with kids ! I'd be over there to build that

NF2 community in a flash if I wasn't.

uestion

has been asked

I AM SURE THAT THIS QUESTION HAS BEEN ASKED BEFORE ON HERE, BUT

I WAS WONDERING HOW MANY PEOPLE THAT KNOW THE Y HAVE NF2 HAVE CONSIDERED

NOT HAVING KIDS DO TO THE RISK TO YOU AND THAT YOU MIGHT PASS NF2 ON TO

YOU CHILD?

[Guest guest]

Lois, I can see your point. This all reminds me of the well to do

parents that abandoned theior 10 year old severly disabled son at a hospital

stating they could no longer take care of him. They were stressed out.

I read a very in depth article abt them and it is amazing that people who

are raising severely disabled children said they could sympathize with,

they didn't approve of it, but they could understand! people who live normal

lives with no health burdens found it out ragious and condemned these parents.

Of course what they sdid was wrong, I am just analyzing this, not implying

any one of us would do that.

Lois, i am not familiar with you, do you have nf2 as well?

How severly is your son affected. Sounds like you could use

a few extra hands, help, and some down time.

Lois Rigo wrote:

This All sounds very good and

infact is good but lets step back and see another view ok? what happens

when you have used up your health taking care of your children ? and its

great if they can do for their self but what about that one in a million

that cant? where do they go than? what do they do and who takes care of

them ??? some one who doesn't really care? or some one to mistreat them?

....PLEASE do not think I'm being hard on you !!! I'm older I think with

health Problems from devoting my life to taking care of A child that cant

help him self ...Oh yes as you said its great to have them love them &

oh what A blessing but than you play out on them & leave them to the

mercy of the world ......I'm fighting this situation now ... I'm not joking

you ... yes I have Aids to come in and help somany hrs A day ... But eventually

the rest is up to me and I can not take care of myself I struggle to bathe

& clean up my home and cook .....So sorry if this sounds harsh ...

I really do not mean it to ...and

for some one else I suppose there could be A different situation .... I

hope .....

[Guest guest]

OK seems like I am left to give you an experienced parents point of view here Dee-Ann !!

Some of you that have replied already are my friends, ( I hope you are !! ) and I want it to stay that way.You guys give me strength, I need your strength and support! which means don't change a thing !!

Anyway I'll cut the ice with heavy statistics:

1. I have three children

2. BOY 12, Girl 10, Boy 6

3. Boy with NF, Girl without, Boy with NF

4. 50 / 50 spot on

5. I have known since age 9 I had something not good

6. Information on Von Recklinghausens Disease was ZERO

7. I had all children after AN surgery

8. We decided to have first child because we wanted to.

9. I have always been determined not to let NF rule my life in anyway.

Many people pass on genetic disease, most cancers are genetic. We smoke, gamble and drink in front of our children which is PROVEN to encourage the same in our kids, which can ruin their lives or kill them. Responsibility doesn't stop EVER when you have kids.

We decided we would care for our first child regardless of any problems. Yes I could have put a stop to the MADNESS then.

Lets put it this way, I would be wealthy now, travel when I feel like it, who knows ! Instead I fall into the three kids, station wagon , mortgage and dog category.

I was lucky in one respect being a man, I didn't have to cope with pregnancy. Yes this really seems to be a tumour accelerator.

Yes NF2 is causing problems for my two sons.

Yes I guess in hindsight it was selfish of me to have children.

Yes we are a happy normal family, but perhaps instead of the normal wash cycle we live in the DEEP RINSE !

My wife and I take responsibility for our children, we don't rely on support in anyway.

My life was given a MISSION to supply as much present and long term support as I can manage with what ever time I may have. I have created a legacy, without me they will survive.

We do live a great life ! We go sailing together, surfing, tennis, beach holidays and they attend a private school.

I take my son away for boating weekends.

My daughter is just so lucky not to have NF, I hope that the simple fact that her family has NF is not held against her.

My third child is the most wonderful child a person could have. He is a natural EVERYTHING and gives us all just so much pleasure.

I receive zilch support from my parental family, they can't cope.

My life is great !! But it seems I have been so lucky with NF.

Would I have my children all over again ? Without doubt!

In the words of another great MARCUS

" Our life is what our thoughts make it "

( Marcus Aurelius s BC ?)

You guys are lucky I am tied down with kids ! I'd be over there to build that NF2 community in a flash if I wasn't.

uestion has been asked

I AM SURE THAT THIS QUESTION HAS BEEN ASKED BEFORE ON HERE, BUT I WAS WONDERING HOW MANY PEOPLE THAT KNOW THE Y HAVE NF2 HAVE CONSIDERED NOT HAVING KIDS DO TO THE RISK TO YOU AND THAT YOU MIGHT PASS NF2 ON TO YOU CHILD?

[Guest guest]

-

You can borrow all three for the weekend. You will have second thoughts by Monday. Oh and I'll throw in the dog for free.

Take care ,,,, Marcus marcus that was beautiful (searching for a hankie!!) The only reason I can with a clear conscious say I dontthink I could have kids knowing I have NF2 is because I DONT HAVE ANY. I know if I did, and if I passed this on to them or not, it wouldnt matter. I would never regret it. In fact, I want kids! Id make a great mom. But its just not in the cards for me. My hub has 2 sons, I have nf2, I am too scared, being a female that it would accelerate tumor growth in me and I wouldnt be around to raise the kid. But trurtyh be told, nothing would make me happier than to habve a couple kids of my own, a dog, and just a normal family. nothing would make me happier than to do this without nf2. Marcus McCallum wrote: OK seems like I am left to give you an experienced parents point of view here Dee-Ann !!Some of you that have replied already are my friends, ( I hope you are !! ) and I want it to stay that way.You guys give me strength, I need your strength and support! which means don't change a thing !! Anyway I'll cut the ice with heavy statistics:1. I have three children2. BOY 12, Girl 10, Boy 63. Boy with NF, Girl without, Boy with NF4. 50 / 50 spot on5. I have known since age 9 I had something not good6. Information on Von Recklinghausens Disease was ZERO7. I had all children after AN surgery8. We decided to have first child because we wanted to.9. I have always been determined not to let NF rule my life in anyway. Many people pass on genetic disease, most cancers are genetic. We smoke, gamble and drink in front of our children which is PROVEN to encourage the same in our kids, which can ruin their lives or kill them. Responsibility doesn't stop EVER when you have kids. We decided we would care for our first child regardless of any problems. Yes I could have put a stop to the MADNESS then.Lets put it this way, I would be wealthy now, travel when I feel like it, who knows ! Instead I fall into the three kids, station wagon , mortgage and dog category.I was lucky in one respect being a man, I didn't have to cope with pregnancy. Yes this really seems to be a tumour accelerator.Yes NF2 is causing problems for my two sons.Yes I guess in hindsight it was selfish of me to have children.Yes we are a happy normal family, but perhaps instead of the normal wash cycle we live in the DEEP RINSE !My wife and I take responsibility for our children, we don't rely on support in anyway.My life was given a MISSION to supply as much present and long term support as I can manage with what ever time I may have. I have created a legacy, without me they will survive.We do live a great life ! We go sailing together, surfing, tennis, beach holidays and they attend a private school.I take my son away for boating weekends.My daughter is just so lucky not to have NF, I hope that the simple fact that her family has NF is not held against her.My third child is the most wonderful child a person could have. He is a natural EVERYTHING and gives us all just so much pleasure.I receive zilch support from my parental family, they can't cope.My life is great !! But it seems I have been so lucky with NF.Would I have my children all over again ? Without doubt!In the words of another great MARCUS " Our life is what our thoughts make it " ( Marcus Aurelius s BC ?)You guys are lucky I am tied down with kids ! I'd be over there to build that NF2 community in a flash if I wasn't. uestion has been asked I AM SURE THAT THIS QUESTION HAS BEEN ASKED BEFORE ON HERE, BUT I WAS WONDERING HOW MANY PEOPLE THAT KNOW THE Y HAVE NF2 HAVE CONSIDERED NOT HAVING KIDS DO TO THE RISK TO YOU AND THAT YOU MIGHT PASS NF2 ON TO YOU CHILD?

[Guest guest]

This All sounds very good and infact is good but lets step back and see another view ok? what happens when you have used up your health taking care of your children ? and its great if they can do for their self but what about that one in a million that cant? where do they go than? what do they do and who takes care of them ??? some one who doesn't really care? or some one to mistreat them? ...PLEASE do not think I'm being hard on you !!! I'm older I think with health Problems from devoting my life to taking care of A child that cant help him self ...Oh yes as you said its great to have them love them & oh what A blessing but than you play out on them & leave them to the mercy of the world ......I'm fighting this situation now ... I'm not joking you ... yes I have Aids to come in and help somany hrs A day ... But eventually the rest is up to me and I can not take care of myself I struggle to bathe & clean up my home and cook .....So sorry if this sounds harsh ... I really do not mean it to ...

and for some one else I suppose there could be A different situation .... I hope .....

Re: i am sure the question MARCUS

marcus that was beautiful (searching for a hankie!!) The only reason I can with a clear conscious say I dontthink I could have kids knowing I have NF2 is because I DONT HAVE ANY. I know if I did, and if I passed this on to them or not, it wouldnt matter. I would never regret it. In fact, I want kids! Id make a great mom. But its just not in the cards for me. My hub has 2 sons, I have nf2, I am too scared, being a female that it would accelerate tumor growth in me and I wouldnt be around to raise the kid. But trurtyh be told, nothing would make me happier than to habve a couple kids of my own, a dog, and just a normal family. nothing would make me happier than to do this without nf2. Marcus McCallum wrote: OK seems like I am left to give you an experienced parents point of view here Dee-Ann !!Some of you that have replied already are my friends, ( I hope you are !! ) and I want it to stay that way.You guys give me strength, I need your strength and support! which means don't change a thing !! Anyway I'll cut the ice with heavy statistics:1. I have three children2. BOY 12, Girl 10, Boy 63. Boy with NF, Girl without, Boy with NF4. 50 / 50 spot on5. I have known since age 9 I had something not good6. Information on Von Recklinghausens Disease was ZERO7. I had all children after AN surgery8. We decided to have first child because we wanted to.9. I have always been determined not to let NF rule my life in anyway. Many people pass on genetic disease, most cancers are genetic. We smoke, gamble and drink in front of our children which is PROVEN to encourage the same in our kids, which can ruin their lives or kill them. Responsibility doesn't stop EVER when you have kids. We decided we would care for our first child regardless of any problems. Yes I could have put a stop to the MADNESS then.Lets put it this way, I would be wealthy now, travel when I feel like it, who knows ! Instead I fall into the three kids, station wagon , mortgage and dog category.I was lucky in one respect being a man, I didn't have to cope with pregnancy. Yes this really seems to be a tumour accelerator.Yes NF2 is causing problems for my two sons.Yes I guess in hindsight it was selfish of me to have children.Yes we are a happy normal family, but perhaps instead of the normal wash cycle we live in the DEEP RINSE !My wife and I take responsibility for our children, we don't rely on support in anyway.My life was given a MISSION to supply as much present and long term support as I can manage with what ever time I may have. I have created a legacy, without me they will survive.We do live a great life ! We go sailing together, surfing, tennis, beach holidays and they attend a private school.I take my son away for boating weekends.My daughter is just so lucky not to have NF, I hope that the simple fact that her family has NF is not held against her.My third child is the most wonderful child a person could have. He is a natural EVERYTHING and gives us all just so much pleasure.I receive zilch support from my parental family, they can't cope.My life is great !! But it seems I have been so lucky with NF.Would I have my children all over again ? Without doubt!In the words of another great MARCUS" Our life is what our thoughts make it"( Marcus Aurelius s BC ?)You guys are lucky I am tied down with kids ! I'd be over there to build that NF2 community in a flash if I wasn't. uestion has been asked I AM SURE THAT THIS QUESTION HAS BEEN ASKED BEFORE ON HERE, BUT I WAS WONDERING HOW MANY PEOPLE THAT KNOW THE Y HAVE NF2 HAVE CONSIDERED NOT HAVING KIDS DO TO THE RISK TO YOU AND THAT YOU MIGHT PASS NF2 ON TO YOU CHILD?

[Guest guest]

Imust've missed this Q. I want to get married someday, and yes, I would like to have children. Yes, maybe they will have NF2, but life is bigger than NF2!! Also there is also adoption ... as for being played out, and worn out by the kids ... I guess I don't understand right now what it's like to feel beaten by NF2. I'm still in a fairly early stage of things here ... but I guess that's what a spouse is there for.

My mother died (she had NF2, but died of cancer, we're even not immune), leaving my father to raise 3 young children by himself. He had nanny's come in at first, but as we got older, we took care of each other. I won't say we had a healthy childhood, but I will say that we're all OK now.

I AM SURE THAT THIS QUESTION HAS BEEN ASKED BEFORE ON HERE, BUT I WAS WONDERING HOW MANY PEOPLE THAT KNOW THE Y HAVE NF2 HAVE CONSIDERED NOT HAVING KIDS DO TO THE RISK TO YOU AND THAT YOU MIGHT PASS NF2 ON TO YOU CHILD?

[Guest guest]

Hi ,

I've been on and off the crew for A long time now But no I do not have NF my Children do ...Mike usto participate on the Crew he reads the posts A lot with Me but well he keeps so busy in other areas now ... My husband has NF and his siblings ALL have it ..... I have Chronic Obstructive Pulmonary Decease ... COPD which means I can not breathe I'm in Pulmonary therapy to try to build my self up to get A lung transplant ... I do not mean to sound like super woman here but yes I do have A lot on me I handle things with Mike his Brother helps all he can ... My husband and several members of his family were affected with nervous brake downs and he could never handle the stress .... he cant even live with him self because he blames him self for Mike .. NO ONE Knew about NF till Mike was born and things started going wrong in 5 th grade for him ... but Mike is A wonderful boy well Guy now he is 35 now and A joy to my life we talk I take him where ever I go He is trying to get into A rehabilitation school so when the inevitable happens he can go on I pray some day he will meet some special girl... but I know from talking to my son he will never put another through this ... Not just the pain but

well its hard to be ALONE ...... Mike wanted to be A minister he loves children he is happy always joking always helping the rest of us handle the next problem ... But my hell here on earth is where will Mike be when I'm no longer here to keep A home for him ... Where will he go who will care his bro & family ? maybe on holidays ... He is so handsome and kind graduated top of his class now he is paraplegic ... I try to keep his mind going with the pc and other things and for as long as I can I will ...

[Guest guest]

Lois,

I do hear you and agree with you totally. It surely depends on your own

picture and frame of reference. From what you experience and I, too, I

would never recommend childbirth within a family where NF is known to exist.

OUr daughter seems to be a genetic mutation, and the idea has scared her

brother who has not the illness. He is devastated by her suffering and the

impact it has had on her developmentally as well. the hardest thing for me

now is to look as our family album and see her when she is little and so

innocently cute. Then, today, to see how she must struggle to enjoy a life

that so many others enjoy without a bit of concerns. In fact, to see those

who knowlingly go out of their way to destroy a " normally healthy " life

(drugs or substance abuse) just infuriates me as I know what she and all of

the Crew endures some to greater and lesser degrees. A hurting Mom, Vicki