Re: New Members & Harry Vershaw

[Guest guest]

,

What a story! I can't believe that just now you are feeling overwhelmed

because you have been dealing with this giant tumor for so long. Now your

baby. Unfortunately they dfo not know enough about NF because our daughter,

too, was diagnosed with NF1 and now they are saying NF2. Somehow, she seems

to be a combination. You, too?

Welcome and we'll keep you and your young family in our prayers. Vicki

(whose 28 year old daughter has NF)

[Guest guest]

,

What a story! I can't believe that just now you are feeling overwhelmed

because you have been dealing with this giant tumor for so long. Now your

baby. Unfortunately they dfo not know enough about NF because our daughter,

too, was diagnosed with NF1 and now they are saying NF2. Somehow, she seems

to be a combination. You, too?

Welcome and we'll keep you and your young family in our prayers. Vicki

(whose 28 year old daughter has NF)

[Guest guest]

,

What a story! I can't believe that just now you are feeling overwhelmed

because you have been dealing with this giant tumor for so long. Now your

baby. Unfortunately they dfo not know enough about NF because our daughter,

too, was diagnosed with NF1 and now they are saying NF2. Somehow, she seems

to be a combination. You, too?

Welcome and we'll keep you and your young family in our prayers. Vicki

(whose 28 year old daughter has NF)

[Guest guest]

Big welcome to you . I am 33 with nf2 too. Am deaf with 6 other

surgeries over the years. Are you saying your baby has acoustic neuromas??? My

heart goes out to you, I have never heard of one so young having them before.

you are to be commended for learning sign language, it will be essential if she

loses hearing plus its fun to learn. Keep us posted and again welcome.

Jennette Braaten wrote:

> Name: & Harry Vershaw

> Location: Quad cities IL

> email: homebody27@...

> Relationship: Patient

> Why I'd like to join:

> My name is , I was diagonozed with NF when I was 12. I have had

> mutilple problems growning up.Just this month I found out I must have NF2 I

> always asumed I had 1 but we just had our third child she is 6 months and

> has been diagnosed with NF2 she has the cafeO leigh spots as I do and she

> had a neurofibroma on the brigde of her nose. they did a CAT scan and an MRI

> when doing so the found she has atuostic neurofibromas on both of her

> auditory nerves.

> THe last surgery I had was 3 years ago they removed a 35 pound tumor from

> the lower spine. since then it has all grown back. but right now we are

> focusing on the baby and have gotten the family started in sign language

> classes.

> TY for taking the time to reveiw my story and hope to hear from you very

> soon Just feeling very over whelmed right now.

> My husband Chuck is a wounderful man and has never even made me feel like I

> was different and can not wish for a better dad to our children. He wants to

> be very involved in here too.

> and Chuck

>

>

>

>

[Guest guest]

Seems to add more weight to the theories about NF2 and NF1 not always being

completely separate, and that maybe somebody can have NF1 and NF2?? Marie

Re: New Members & Harry Vershaw

>Big welcome to you . I am 33 with nf2 too. Am deaf with 6 other

>surgeries over the years. Are you saying your baby has acoustic neuromas???

My

>heart goes out to you, I have never heard of one so young having them

before.

>you are to be commended for learning sign language, it will be essential if

she

>loses hearing plus its fun to learn. Keep us posted and again welcome.

>

>Jennette Braaten wrote:

>

>> Name: & Harry Vershaw

>> Location: Quad cities IL

>> email: homebody27@...

>> Relationship: Patient

>> Why I'd like to join:

>> My name is , I was diagonozed with NF when I was 12. I have had

>> mutilple problems growning up.Just this month I found out I must have NF2

I

>> always asumed I had 1 but we just had our third child she is 6 months and

>> has been diagnosed with NF2 she has the cafeO leigh spots as I do and

she

>> had a neurofibroma on the brigde of her nose. they did a CAT scan and an

MRI

>> when doing so the found she has atuostic neurofibromas on both of her

>> auditory nerves.

>> THe last surgery I had was 3 years ago they removed a 35 pound tumor from

>> the lower spine. since then it has all grown back. but right now we are

>> focusing on the baby and have gotten the family started in sign language

>> classes.

>> TY for taking the time to reveiw my story and hope to hear from you very

>> soon Just feeling very over whelmed right now.

>> My husband Chuck is a wounderful man and has never even made me feel like

I

>> was different and can not wish for a better dad to our children. He wants

to

>> be very involved in here too.

>> and Chuck

>>

>>

>>

>>

[Guest guest]

Seems to add more weight to the theories about NF2 and NF1 not always being

completely separate, and that maybe somebody can have NF1 and NF2?? Marie

Re: New Members & Harry Vershaw

>Big welcome to you . I am 33 with nf2 too. Am deaf with 6 other

>surgeries over the years. Are you saying your baby has acoustic neuromas???

My

>heart goes out to you, I have never heard of one so young having them

before.

>you are to be commended for learning sign language, it will be essential if

she

>loses hearing plus its fun to learn. Keep us posted and again welcome.

>

>Jennette Braaten wrote:

>

>> Name: & Harry Vershaw

>> Location: Quad cities IL

>> email: homebody27@...

>> Relationship: Patient

>> Why I'd like to join:

>> My name is , I was diagonozed with NF when I was 12. I have had

>> mutilple problems growning up.Just this month I found out I must have NF2

I

>> always asumed I had 1 but we just had our third child she is 6 months and

>> has been diagnosed with NF2 she has the cafeO leigh spots as I do and

she

>> had a neurofibroma on the brigde of her nose. they did a CAT scan and an

MRI

>> when doing so the found she has atuostic neurofibromas on both of her

>> auditory nerves.

>> THe last surgery I had was 3 years ago they removed a 35 pound tumor from

>> the lower spine. since then it has all grown back. but right now we are

>> focusing on the baby and have gotten the family started in sign language

>> classes.

>> TY for taking the time to reveiw my story and hope to hear from you very

>> soon Just feeling very over whelmed right now.

>> My husband Chuck is a wounderful man and has never even made me feel like

I

>> was different and can not wish for a better dad to our children. He wants

to

>> be very involved in here too.

>> and Chuck

>>

>>

>>

>>

[Guest guest]

Welcome and Harry.

I'm Marcus 43 from Australia I have NF2 as do two of my three children.

Glad you found us.

Marcus

[Guest guest]

Dear and Chuck...My goodness.....you surely do have your

hands full. My blessings and thoughts of prayer are with you and your family.

Welcome to the crew, the people are very helpful and are not afraid to share

their experiences.

God Bless You...

Carol

land

Jennette Braaten wrote:

Name: & Harry VershawLocation: Quad cities ILemail: homebody27@...Relationship: Patient

[Guest guest]

Dear and Harry: -

Welcome to the crew! It is a good place to have friends. And, I learn

a lot from these guys!

I am sorry you have so many challenges with your NF1 and NF2. I am glad

you have each other!

I am 49 (one of the older and wiser crewbie's - hahaha!) just joking

on the wiser part, and have been deaf for almost 6 years from my NF2.

Love and prayers,

Jane

New Members & Harry Vershaw

>Name: & Harry Vershaw

>Location: Quad cities IL

>email: homebody27@...

>Relationship: Patient

>Why I'd like to join:

> My name is , I was diagonozed with NF when I was 12. I have had

>mutilple problems growning up.Just this month I found out I must have NF2 I

>always asumed I had 1 but we just had our third child she is 6 months and

>has been diagnosed with NF2 she has the cafeO leigh spots as I do and she

>had a neurofibroma on the brigde of her nose. they did a CAT scan and an

MRI

>when doing so the found she has atuostic neurofibromas on both of her

>auditory nerves.

>THe last surgery I had was 3 years ago they removed a 35 pound tumor from

>the lower spine. since then it has all grown back. but right now we are

>focusing on the baby and have gotten the family started in sign language

>classes.

>TY for taking the time to reveiw my story and hope to hear from you very

>soon Just feeling very over whelmed right now.

>My husband Chuck is a wounderful man and has never even made me feel like I

>was different and can not wish for a better dad to our children. He wants

to

>be very involved in here too.

> and Chuck

>

>

>

>

>

>

>

>

>

[Guest guest]

OH AND P.S. I LIVE IN BURLINGTON, IOWA, SO I AM NOT TO FAR FROM YOU -

11/2 HOURS DRIVE. I GO TO IOWA CITY, IOWA (UIHC) IF YOU DON'T MIND

SHARING WHAT HOSPITAL DO YOU GO TO FOR YOUR NF1 AND NF2? SOMEWHERE IN THE

QUAD CITIES?

JANE WILSON

New Members & Harry Vershaw

>Name: & Harry Vershaw

>Location: Quad cities IL

>email: homebody27@...

>Relationship: Patient

>Why I'd like to join:

> My name is , I was diagonozed with NF when I was 12. I have had

>mutilple problems growning up.Just this month I found out I must have NF2 I

>always asumed I had 1 but we just had our third child she is 6 months and

>has been diagnosed with NF2 she has the cafeO leigh spots as I do and she

>had a neurofibroma on the brigde of her nose. they did a CAT scan and an

MRI

>when doing so the found she has atuostic neurofibromas on both of her

>auditory nerves.

>THe last surgery I had was 3 years ago they removed a 35 pound tumor from

>the lower spine. since then it has all grown back. but right now we are

>focusing on the baby and have gotten the family started in sign language

>classes.

>TY for taking the time to reveiw my story and hope to hear from you very

>soon Just feeling very over whelmed right now.

>My husband Chuck is a wounderful man and has never even made me feel like I

>was different and can not wish for a better dad to our children. He wants

to

>be very involved in here too.

> and Chuck

>

>

>

>

>

>

>

>

>