Hello all, my friend's 16 year old son has been told he has Marphan's.
We live in Pensacola, FL and she is having trouble finding good Dr.'s
and support groups. I am going to encourage her to join in the chats
you all have......her son has had collapsed lungs, heart condition (not
sure the name of the one he has), scoliosis, hurts severly and
definetly falls into the physical description.  If anyone can offer any
suggestions for her on how to handle all of this, it would be
appreciated. She is feeling very scared and very alone at this
point......and of course, some of the Dr's he sees say its not
Marfan's.....which upsets her more, but he was dianosed with it up
North.....take care.

Christy

I and my 2 children have marfans and all I am is a little short sighted with the eyes

Sue

Bridgette <Heartstitcher@...> wrote:

By what age would the eyes be affected with Marfan...
I have read up on some things on the internet, and it looks as if
Marfan ALWAYS affects the eyes in some manner....

is this from birth, or older?

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Hi Nancy

I wish I could tell you that before a dissection there are symptoms but for me there were none, it just happened. Within 30 seconds I dropped to my knees and couldn't breath. Incredible pain initally in my chest but soon went through to my back with each heart beat incredible pain. The best thing you can do is tell the people around this person what to look for so they can immediately get help suspecting a dissection. Nothing can be done but to get an ambulance immediately. I can remember not wanting to lie down as this made breathing worse and pain more intense. Fortunately i was with a friend who knew what to do and rang my husband who rang an ambulance. I could have done neither. There was no warning signs for me.I don't wish to scare you but this is how it was or me.

Sue

Nancy Collins <njcjesus@...> wrote:

hello.

I thought that there were many test that would determine marfans. My daughter had every symptom of it. She had scoloisis. mitral valve prolaspe, a heart murmer, very long fingers and arms. a pectus escavatum. eye problems, strech marks on her hips. high roof of her mouth crowded teeth, (she had to have 9 teeth pulled to get her braces on) flat feet. the one strang sting was her blood type. it was ab negative has anybody heard of rare blood with marfans? Also to anybody who had a dissection please write in and let me know the symptoms that you had when it happened. did you pass out. were you aware that something was going on? Ihave alot of questions that I cant seem to get answered,

Thank You.

Nancy 
larie beck <ty_ree_b@...> wrote:

Bridgette,

Im so glad to hear that your daughters eyes are healthy!

Was she suspected of having marfans because of her build, or was there other concerns?

 

I truly hope that she does not have marfans, and she just is built like someone that does. And even if she where to have marfans it sounds like she wouldnt be affected that much by it any time soon. 

One of the things that gives me hope ,is that my sons biggest problem has been his eyes, ( wich have been treated very succesfully by doc's) and technology is getting better every day. So by the time any other problems may arise they might have better treatment or a cure.

Thanks for sharing your good news Bridgett!

 A question to the elders of the group... I thought only a genetacyst could confirm or exclude marfans based on results from various specialysts ( cardio, optholmolagy, orthopedic) and a family history? Is that not the case?

 

Hugs to everyone,

Larie

Bridgette <Heartstitcher@...> wrote:

I first want to thank you for all of your kind words and thoughts.
I know I am the way I am because of seeing my daughter go through open
heart surgery for heart defects at 4 days of age. It truly has humbled
me and my husband.

I took my daughter to the opthomologist this morning.
He said her fingers were hyperflexible, and she had a high arch in the
roof of her mouth..he looked at a couple of things before checking her
eyes out.
He said my daughter's doctor sent over another child a couple of weeks
ago that the eye doctor confirmed was Marfans.

he mentioned, he too was thought to have Marfans when he was younger,
but did not. So, he was well aware what Marfans is, and what to look
for. He is also an MD and a eye surgeon.

He did a thorough exam of our daughter, and said her eyes looked very
healthy, and that her eyeglasses prescription would remain the same, a
very weak prescription, she doesn't need strong eyeglasses for distance.
He said he saw no retinal detachment, and no signs or symptoms of
Marfan in her eyes at all!!!

I asked him if it was too early to tell..he said he probably would
have seen something at her age already ..she is almost 11.

he wants to see her back in a year from now.
for a check up.

My daughter will continue to have her heart checkups, because she has
a bicuspid aortic valve from birth we have to worry about.

Thank you everyone for your kindness,
I guess our daughter just has a lot of genetic body traits from a lot
of relatives..thin, flexible hands, and lanky too.

Bridgette

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hello.

I thought that there were many test that would determine marfans. My daughter had every symptom of it. She had scoloisis. mitral valve prolaspe, a heart murmer, very long fingers and arms. a pectus escavatum. eye problems, strech marks on her hips. high roof of her mouth crowded teeth, (she had to have 9 teeth pulled to get her braces on) flat feet. the one strang sting was her blood type. it was ab negative has anybody heard of rare blood with marfans? Also to anybody who had a dissection please write in and let me know the symptoms that you had when it happened. did you pass out. were you aware that something was going on? Ihave alot of questions that I cant seem to get answered,

Thank You.

Nancy 
larie beck <ty_ree_b@...> wrote:

Bridgette,

Im so glad to hear that your daughters eyes are healthy!

Was she suspected of having marfans because of her build, or was there other concerns?

 

I truly hope that she does not have marfans, and she just is built like someone that does. And even if she where to have marfans it sounds like she wouldnt be affected that much by it any time soon. 

One of the things that gives me hope ,is that my sons biggest problem has been his eyes, ( wich have been treated very succesfully by doc's) and technology is getting better every day. So by the time any other problems may arise they might have better treatment or a cure.

Thanks for sharing your good news Bridgett!

 A question to the elders of the group... I thought only a genetacyst could confirm or exclude marfans based on results from various specialysts ( cardio, optholmolagy, orthopedic) and a family history? Is that not the case?

 

Hugs to everyone,

Larie

Bridgette <Heartstitcher@...> wrote:

I first want to thank you for all of your kind words and thoughts.
I know I am the way I am because of seeing my daughter go through open
heart surgery for heart defects at 4 days of age. It truly has humbled
me and my husband.

I took my daughter to the opthomologist this morning.
He said her fingers were hyperflexible, and she had a high arch in the
roof of her mouth..he looked at a couple of things before checking her
eyes out.
He said my daughter's doctor sent over another child a couple of weeks
ago that the eye doctor confirmed was Marfans.

he mentioned, he too was thought to have Marfans when he was younger,
but did not. So, he was well aware what Marfans is, and what to look
for. He is also an MD and a eye surgeon.

He did a thorough exam of our daughter, and said her eyes looked very
healthy, and that her eyeglasses prescription would remain the same, a
very weak prescription, she doesn't need strong eyeglasses for distance.
He said he saw no retinal detachment, and no signs or symptoms of
Marfan in her eyes at all!!!

I asked him if it was too early to tell..he said he probably would
have seen something at her age already ..she is almost 11.

he wants to see her back in a year from now.
for a check up.

My daughter will continue to have her heart checkups, because she has
a bicuspid aortic valve from birth we have to worry about.

Thank you everyone for your kindness,
I guess our daughter just has a lot of genetic body traits from a lot
of relatives..thin, flexible hands, and lanky too.

Bridgette

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By what age would the eyes be affected with Marfan...
I have read up on some things on the internet, and it looks as if
Marfan ALWAYS affects the eyes in some manner....

is this from birth, or older?

Send instant messages to your online friends http://au.messenger.yahoo.com

Thanks so much for your posts/emails.

I have one thing to say.

I have never seen such a more caring wonderful group of people in my life.

Even if my daughter does not turn up having Marfan, I am very glad and
blessed I have met all of you.!!

We will continue to have checks, our daughter goes to the cardiologist
the end of july.

Is the Aorta enlarged from early on?

After our daughters heart surgery as a newborn, her heart check ups
have been fine. No enlargement at all. She will continue to go yearly
for that. We do keep up with the appointments, to make sure our little
girl stays healthy.

thank you everyone for your kindness!!!

Bridgette

Send instant messages to your online friends http://au.messenger.yahoo.com

Hi I have a 5 year old son whom was born with a BAV, he the had to
have was is called the Ross-Procedure.  They removed his aortic
valve and toook his own pulmonary valve and transplanted it into the
aortic position.  That was at age 11 months.  Then Jason's valve
became very leaky causing other problems.  At age 3 1/2 I went to
Cleveland Clinic and Dr. Mee was able to repair his aortic valve
(formally his pulmonary valve) U of M wanted to put in a machanical
valve and I felt there was other options.  Anyway..... While Jason
was in surgery having his aortic valve repaired and another human
donor pulmonary valve put in they relized Jason had a huge 4.8
acending aortic aneurysum.  They did some slight repair.  The
aneurysum is now 2.9.
I was told that Jason will be followed as if he had Marfan.  Though
he does not have all the characteristics.
He is on Enalapril and Atenolol.  I am searching for others with
aortic aneurysums and how they deal with it.  I know he can not play
any sports what so ever.  Jason is extremly active so this scares me.
Also I am searching to find out what other blood pressure meds
others are on to treat there heart disorders.

Thank you,
Rhonda mom to Jackie 16 and Jason 4 1/2 AI, AS, PI, PS, acending
aortic root aneurysum told to treat it as if he has Marfans.

Hi Scott
Curious who you are seeing in NY Marfan clinic.  I
have gone to NY Cornell Dr. Deveruex for the past 20
years but have never heard about a clinic.
But am interesested in any information of Dural
Ectasia. Especially who would evaulate it.
Thanks and good luck,
Sandi


--- budojones <budojones@...> wrote:

> Hello all.
>
> I'm checking in again with another question.  As I'm
> seeing someone in
> the NY Marfan clinic next month, I was wondering
> about another
> criteria for evaluation.. dural ectasia.  I'm
> learning more and more
> about Marfan and all of the related symptoms.
>
> How did you pursue this item for evaluation?  Was it
> part of an
> orthopedic visit, rheumatologist visit or Marfan
> consultation?
>
> I do experience back pain on a regular basis and
> I've been through all
> of the other diagnostic criteria in preparation for
> the visit to the
> clinic next month.
>
> I was wondering when to pursue this..before or after
> the Marfan visit.
>
> Thanks!  All of your replies and posts are very
> reassuring, comforting
> and inspirational.
>
> Scott
>
>
>
>
>
>


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PRAISE GOD !

I 'm so glad to k now that things went well for him. Please keep

us posted on how he's doing 

Nancy
nlightnn <nlightnn@...> wrote:

Hello..I just wanted to post a quick note..Austins mitral valve
surgery went well, they were able to do a repair, and a repair better
than they hoped for. This morning his cardiologist said he could not
even hear a murmur, before it was pronounced. Hes doing well after a
rough night, they took him off the ventilator this morning, so far so
good there. Thanks to all who have been a great source of support for
us!






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Hello..I just wanted to post a quick note..Austins mitral valve
surgery went well, they were able to do a repair, and a repair better
than they hoped for. This morning his cardiologist said he could not
even hear a murmur, before it was pronounced. Hes doing well after a
rough night, they took him off the ventilator this morning, so far so
good there. Thanks to all who have been a great source of support for
us!

Hello..I just wanted to post a quick note..Austins mitral valve
surgery went well, they were able to do a repair, and a repair better
than they hoped for. This morning his cardiologist said he could not
even hear a murmur, before it was pronounced. Hes doing well after a
rough night, they took him off the ventilator this morning, so far so
good there. Thanks to all who have been a great source of support for
us!






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I am so happy to hear he is doing well!!
What wonderful news,
God Bless him,
Bridgette

I have been doing more research and found that there are many other
disorders that are similar in certain ways to marfan..
such as
Shprintzen-Goldberg Syndrome

I would think the only way to know for sure what you have would be to
get a genetics test? This would make sure you wouldn't get a wrong
diagnosis..

bridgette

Hello..I just wanted to post a quick note..Austins mitral valve
surgery went well, they were able to do a repair, and a repair better
than they hoped for. This morning his cardiologist said he could not
even hear a murmur, before it was pronounced. Hes doing well after a
rough night, they took him off the ventilator this morning, so far so
good there. Thanks to all who have been a great source of support for
us!

I have been doing more research and found that there are many other
disorders that are similar in certain ways to marfan..
such as
Shprintzen-Goldberg Syndrome

I would think the only way to know for sure what you have would be to
get a genetics test? This would make sure you wouldn't get a wrong
diagnosis..

bridgette

Scott, wanted to wish you good luck with your visit, and to re-assure
you that NY has some of the best doctors around!
Our daughter had her Open heart surgery in NY when she was only 4 days
old.
We keep hearing that NY has some of the BEST doctors available in the
states!
Because of our miracle (our daughter) we also agree!

good luck to you,
Bridgette

Hello all.

I'm checking in again with another question.  As I'm seeing someone in
the NY Marfan clinic next month, I was wondering about another
criteria for evaluation.. dural ectasia.  I'm learning more and more
about Marfan and all of the related symptoms.

How did you pursue this item for evaluation?  Was it part of an
orthopedic visit, rheumatologist visit or Marfan consultation?

I do experience back pain on a regular basis and I've been through all
of the other diagnostic criteria in preparation for the visit to the
clinic next month.

I was wondering when to pursue this..before or after the Marfan visit.

Thanks!  All of your replies and posts are very reassuring, comforting
and inspirational.

Scott

Thanks so much for your posts/emails.

I have one thing to say.

I have never seen such a more caring wonderful group of people in my life.

Even if my daughter does not turn up having Marfan, I am very glad and
blessed I have met all of you.!!

We will continue to have checks, our daughter goes to the cardiologist
the end of july.

Is the Aorta enlarged from early on?

After our daughters heart surgery as a newborn, her heart check ups
have been fine. No enlargement at all. She will continue to go yearly
for that. We do keep up with the appointments, to make sure our little
girl stays healthy.

thank you everyone for your kindness!!!

Bridgette

By what age would the eyes be affected with Marfan...
I have read up on some  things on the internet, and it looks as if
Marfan ALWAYS affects the eyes in some manner....


is this from birth, or older?

Well....my daughter doesn't have all the signs of Marfan.
She slender with long arms. She does wear eyeglasses for
nearsightedness (so do I and her father).
the doctor mentioned Marfan when he saw her build.
I came to find out that just two weeks ago this doctor diagnosed a
child that did indeed have Marfans. I guess he is keeping a close eye
on the children that come to his office, making sure he doesn't miss
anything, which is a good doctor.

My daughter does not have scoliosis, crowded teeth,chest wall problems.
she does not have flat feet, mitral valve prolapse, and some of the
other symptoms associated with Marfans.

My daughter has long arms (like a lot of her paternal side of the
family), she is flexible and was born with heart defects.
But the doctor did say that her heart defects are congenital, from
birth, and not associated with Marfan.

Although, he said the affected valve is a sign....
Now, I thought the mitral valve was the issue with Marfan? My daughter
has a problem with her bicuspid aortic valve , a different valve in
the heart...

The pediatrician said a genetecist could do a test, but he wanted to
send her to the eye doctor first and the cardiologist.

Yes, she has an appointment the end of July, she goes every year. She
was born with Transposition of the great arteries of her heart. She
was succesfully operated on at 4 days of age.

The Opthomologist said he didn't see ANY sign of Marfan by looking at
her eyes...


that is what I know for now.

Have a nice day everyone,
Bridgette

Bridgette,

Im so glad to hear that your daughters eyes are healthy!

Was she suspected of having marfans because of her build, or was there other concerns?

 

I truly hope that she does not have marfans, and she just is built like someone that does. And even if she where to have marfans it sounds like she wouldnt be affected that much by it any time soon. 

One of the things that gives me hope ,is that my sons biggest problem has been his eyes, ( wich have been treated very succesfully by doc's) and technology is getting better every day. So by the time any other problems may arise they might have better treatment or a cure.

Thanks for sharing your good news Bridgett!

 A question to the elders of the group... I thought only a genetacyst could confirm or exclude marfans based on results from various specialysts ( cardio, optholmolagy, orthopedic) and a family history? Is that not the case?

 

Hugs to everyone,

Larie

Bridgette <Heartstitcher@...> wrote:

I first want to thank you for all of your kind words and thoughts.
I know I am the way I am because of seeing my daughter go through open
heart surgery for heart defects at 4 days of age. It truly has humbled
me and my husband.

I took my daughter to the opthomologist this morning.
He said her fingers were hyperflexible, and she had a high arch in the
roof of her mouth..he looked at a couple of things before checking her
eyes out.
He said my daughter's doctor sent over another child a couple of weeks
ago that the eye doctor confirmed was Marfans.

he mentioned, he too was thought to have Marfans when he was younger,
but did not. So, he was well aware what Marfans is, and what to look
for. He is also an MD and a eye surgeon.

He did a thorough exam of our daughter, and said her eyes looked very
healthy, and that her eyeglasses prescription would remain the same, a
very weak prescription, she doesn't need strong eyeglasses for distance.
He said he saw no retinal detachment, and no signs or symptoms of
Marfan in her eyes at all!!!

I asked him if it was too early to tell..he said he probably would
have seen something at her age already ..she is almost 11.

he wants to see her back in a year from now.
for a check up.

My daughter will continue to have her heart checkups, because she has
a bicuspid aortic valve from birth we have to worry about.

Thank you everyone for your kindness,
I guess our daughter just has a lot of genetic body traits from a lot
of relatives..thin, flexible hands, and lanky too.

Bridgette

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Thanks for sharing your good news Bridgett!

I first want to thank you for all of your kind words and thoughts.
I know I am the way I am because of seeing my daughter go through open
heart surgery for heart defects at 4 days of age. It truly has humbled
me and my husband.

I took my daughter to the opthomologist this morning.
He said her fingers were hyperflexible, and she had a high arch in the
roof of her mouth..he looked at a couple of things before checking her
eyes out.
He said my daughter's doctor sent over another child a couple of weeks
ago that the eye doctor confirmed was Marfans.

he mentioned, he too was thought to have Marfans when he was younger,
but did not. So, he was well aware what Marfans is, and what to look
for. He is also an MD and a eye surgeon.

He did a thorough exam of our daughter, and said her eyes looked very
healthy, and that her eyeglasses prescription would remain the same, a
very weak prescription, she doesn't need strong eyeglasses for distance.
He said he saw no retinal detachment, and no signs or symptoms of
Marfan in her eyes at all!!!

I asked him if it was too early to tell..he said he probably would
have seen something at her age already ..she is almost 11.

he wants to see her back in a year from now.
for a check up.

My daughter will continue to have her heart checkups, because she has
a bicuspid aortic valve from birth we have to worry about.

Thank you everyone for your kindness,
I guess our daughter just has a lot of genetic body traits from a lot
of relatives..thin, flexible hands, and lanky too.

Bridgette

__________________________________________________
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He did a thorough exam of our daughter, and said her eyes looked very
healthy, and that her eyeglasses prescription would remain the same, a
very weak prescription, she doesn't need strong eyeglasses for distance.
He said he saw no retinal detachment, and no signs or symptoms of
Marfan in her eyes at all!!!

My daughter will continue to have her heart checkups, because she has
a bicuspid aortic valve from birth we have to worry about.

Thank you everyone for your kindness,
I guess our daughter just has a lot of genetic body traits from a lot
of relatives..thin, flexible hands, and lanky too.

Bridgette

I am in Northern Florida.
I try to be the best Mom I can be..I didn't have the best Mother
growing up , and I am making sure that my children have the best they
could ever want! I love them unconditionally, and equally.
My son is 16 and not built like my daughter at all.
I am blessed for the two children I have.
I think when a family goes through an unexpected twist, like an
illness or a birth defect, they learn to love even more, and
appreciate the gifts they have been given.
My children are my life. Drives me crazy when I hear people say that
they want their unborn child to be a girl, or a boy, before they
know..I tell them "you want a healthy child"!!
but, only people who have had a sick child understand this.
thanks everyone for your kind words!

Have a great day!
Bridgette

I first want to thank you for all of your kind words and thoughts.
I know I am the way I am because of seeing my daughter go through open
heart surgery for heart defects at 4 days of age. It truly has humbled
me and my husband.

I took my daughter to the opthomologist this morning.
He said her fingers were hyperflexible, and she had a high arch in the
roof of her mouth..he looked at a couple of things before checking her
eyes out.
He said my daughter's doctor sent over another child a couple of weeks
ago that the eye doctor confirmed was Marfans.

he mentioned, he too was thought to have Marfans when he was younger,
but did not. So, he was well aware what Marfans is, and what to look
for. He is also an MD and a eye surgeon.

He did a thorough exam of our daughter, and said her eyes looked very
healthy, and that her eyeglasses prescription would remain the same, a
very weak prescription, she doesn't need strong eyeglasses for distance.
He said he saw no retinal detachment, and no signs or symptoms of
Marfan in her eyes at all!!!

I asked him if it was too early to tell..he said he probably would
have seen something at her age already ..she is almost 11.

he wants to see her back in a year from now.
for a check up.

My daughter will continue to have her heart checkups, because she has
a bicuspid aortic valve from birth we have to worry about.

Thank you everyone for your kindness,
I guess our daughter just has a lot of genetic body traits from a lot
of relatives..thin, flexible hands, and lanky too.

Bridgette

Bridgette,

I too have a daughter with Marfans!  She is now 19 years old and a wonderful, beautiful, statuesque young woman.  We have known that Catie has Marfans since almost the minute she was born and we have dealt with the pain and her embarrassment every day but she is a much stronger woman for it!  Let me assure you that they do grow from the experience.

We are a very supportive group here and will do everything and anything that we can to help you through all of this.  I know that each and every person here is in my thoughts and prayeres every day and now you and your family are included!  Please feel free to contact me off the group if you care to.  Let us know where you are and we can possibly get you connected with a support group or network.

Love hard and love long!

Debbie C.
Bridgette <Heartstitcher@...> wrote:

I took my daughter to the pediatrician yesterday...

I also pray for the strength, if I get any other news on our daughter.
I feel like I could not handle it. I cry easily. I don't want my
daughter to see me cry. I love her so much, she is my life...

geesh, I am crying typing this!!!!

I am glad I found this group,
Bless you all,
Bridgette






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dear Bridgett,

I couldnt help but write to you after reading your letter. I know that things are really hard for you right now but the Lord will walk you through it. I was just heart broken with  the news that my daughter had marfans. I'd never heard of it before it just killed me !!! She wasnt diagnosed until she was around 11. She led a good happy life and I will cherish the times that we had. She had numerous surgeries  on her spine for sc oliosis and numerous surgeries on other problems. You have to keep your faith in the Lord and let him direct your path. I know at times like these it can be pretty hard to keep you chin up and I will keep you in my prayers. Please e-mail me and if you would like I will give you my phone number if you ever need to talk. My e-mail address is njcjesus@....

god bless

Nancy
Bridgette <Heartstitcher@...> wrote:

I took my daughter to the pediatrician yesterday...
He measured her arm length, and was honest with me and said that he
only had one child in 30 years that had Marfan..he is not well
educated on it.
I searched the internet myself, and I think I know a little more now
than before...
He is not definite yet if our little girl has Marfan, she is going to
the Opthomologist tomorrow.
I can't help but be worried and upset. I have been crying a lot
yesterday and today. I know I should be so worried until I know for sure.
OUr daughter went through so much with open heart surgery for defects
when she was born. I feel as if she has had enough to deal with
already in her life. She is only 10 1/2 years old.

I truly believe there is a purpose for every life here on earth.
What I don't understand is why some have to endure so much more than
others.

I believe our God has a plan. I am so sorry so many of you are going
through so much. I pray for all of you. I also pray for my daughter,
and that things will turn out well. Even if she doesn't have Marfans,
she has heart defects that were corrected, but a bicuspid valve that
may affect her in her future.

I also pray for the strength, if I get any other news on our daughter.
I feel like I could not handle it. I cry easily. I don't want my
daughter to see me cry. I love her so much, she is my life...

geesh, I am crying typing this!!!!

I am glad I found this group,
Bless you all,
Bridgette






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