John Taverner: A visionary visited by angels
Posted at 10:06 PM
Telegraph | Arts | A visionary visited by angels: "Sir John is 60 and lucky to be alive. At 30 he had a stroke, followed later by heart surgery to correct a leaking valve, an effect of the Marfan syndrome (a condition affecting the body's connective tissue and found in unusually tall people) he has had since birth. "

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One more Marf Comic Cover
Posted at 8:00 PM
Thomas Schrantz sure is funny!

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I'm awake now
Posted at 2:06 PM
Yesterday's Project Blog blogging marathon was fun. I'm already looking forward to the Blogathon next year.

If you sponsored me, THANK YOU! You should receive an e-mail in the next day or two reminding you of your pledge and giving you instructions about how to donate. If you want to do it now, I've posted the instructions here. You can still sponsor me through the Project Blog website (so the total amount of donations raised through Project Blog can be recorded), or if you want, you can always just donate to the National Marfan Foundation.

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Goodnight!
Posted at 8:00 AM

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Jeff, Joe and Julie
Posted at 8:00 AM
Every year since I got to know other people beside myself with the Marfan syndrome there have been painful losses. I couldn't list all those who I've gotten to know, even for a bit, like Scott Keifer, who I only heard speaking at a conference once, but he made me laugh so hard I felt great about being part of the Marfan community. Or Chris Paulsen, whose posts to Marfan-List always made me crack up. Or Jane Harris, who I knew both online and off. It is alway so hard to hear of their deaths, at such young ages.

This year, three people who were very close to the Marfan community in many ways passed away. Jeff Goldman, Joe Neustadt, and Julie Kurnitz are all remembered for their laughter and love. There is a beautiful picture of Julie Kurnitz here on the Canadian Marfan website. A woman who sent me an off-line post this evening said she thought Julie's "Clinical Trials" ought to be mandatory viewing for doctors.

I thought about all the friends the Marfan community has lost over the last few years throughout the day and night today as I blogged, and also thought of those who are still with us, helping us laugh and being there when we cry. I am very grateful to know so many wonderful people including the staff of the NMF, my fellow board and committee members, and of course all the people who live with the Marfan syndome in their lives or the lives of their families.

(Okay, that sounds a bit maudlin, but I haven't had sleep in over 24 hours. I mean it all, though!)

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Haiku by Bryan Jones
Posted at 7:40 AM
Julie Kurnitz
there in nebraska,
bright eyes, bright clothes, she
taught a room to laugh

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My award
Posted at 7:28 AM
I was maybe not going to post this, since it might look like I'm bragging. But the way I feel right now? I've been up for more than 24 hours, and I do feel I deserve something like this! At the National Marfan Foundation conference in Beverly Hills this month, I was surprised with a "Heart of the Matter" award. It's sooo beautiful!

The inscription reads "Jeanette Navia In recognition of your commitment to the NMF and the Marfan community through the "Marfan List" and blogging for Marfan awareness. July 2004." I blogged in the Blogathon last year, and was told that was when the decision was made. It's so pretty! Thanks, everyone who was in on this!

I'm so punchy!

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Haiku by Bryan Jones
Posted at 6:58 AM
Chris Carnes
a picture i keep
of his fingers that could dance
across the strings

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Pictures from last year's John H. Morrell III Memorial Walk
Posted at 6:28 AM

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MarfMan Comic Book Cover #6
Posted at 6:17 AM

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Mohammad
Posted at 5:59 AM

Mohammad is from Syria. He is shown here with some American friends. Mohammad either recently graduated or is about to graduate with a degree in medicine.

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Three Poems by Barb W. Jones
Posted at 5:29 AM


To and Fro
What will become of us when we no longer
carry our skeletons to and fro?
We have traveled so far for so long.
Isn’t this time on earth worth more than
a mortal’s tale?
The message on my tombstone could
never point the way.
What can I do that will change the world?
I am only a wandering soul
on a mission from the wind.
Today I am here as breath and light.
Is there more?
Why are these bones so heavy?

Sometimes I Feel the Bones
Sometimes I feel the bones;
Raw, cold, clattering sticks.
Sometimes I feel the skin;
Soft, weeping tissues, carrying heat and passion.
Sometimes I feel the muscles
And cannot stop running to and running from.
Shadows turn to light
And days fall into darkness.
I don’t know what stays after all the changes.
I don’t know where to find sublime stillness.
Clouds form as I seek the light.
Days appear and I become the shadow.

Spirit
That you came to me
so softly, or too quickly,
or not at all.
That you appeared
when I most needed you,
or when I turned away.
That you came to me most quietly
again, and then now.
That you became me, and I you.
Spirit,
Touch me again.
Let my body be earth’s horizon,
And you the sky.


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More Marfan Haiku from Bryan Jones
Posted at 5:00 AM
I    am    a    tall    man.
It    is    ex    pec    ted    that    i
lift   hea    vy    ob    jects.

the right eye saw spots.
one little spot, one big spot.
now it does not see

some days it is hard
to think about my future
i really want one

they don't want health care
"the american people"
they want cheap oil

Lower my taxes,
pave the roads. Raise my taxes,
build a hospital.

"We should let her play."
"No, it could cut short her life!"
parental burdens

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From Anonymous
Posted at 4:30 AM
I'm 44 years old, 3 operations in the past 12 years and lived to tell about it. Many others have not been as fortunate as I have. Sooner or later we will meet again.
I have some huge scars but I'm not scared of Marfan.
There are a lot worse things than Marfan, I admit to feeling sorry for myself a long time ago but I cast that away. Good riddance, be glad for what you have, make the most of what can be and forget about what might have been.
A few things I know for sure...
If you have frequent Marfan related aches and pains like I do - suck it up and get moving!
Join a Cardiac Rehab program. Regular controlled exercise has contributed greatly to my quality of life.
If you wait until your body is in major crisis you're too late, that will kill you.
If you have to have surgery go to a surgeon who has successfully repaired Marfan patients, don't settle for anyone else, we are different.
If your Doctor acts like God, find another Doctor.
Play hardball with your insurance, I have travelled for all 3 surgeries and went to the best surgeon I could find. Insurance paid every time and saw things like I wanted them to.
Contact the NMF if you have any questions, those folks know more about this than anyone.
Support the NMF.
Thank You Jeanette for all you do!


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From Sue
Posted at 4:00 AM
When i first find out i had Marfan i was really scared.I thought want is this thing that my mother died of it makes you go blind then you drop down dead.I have since leant a lot more about marfan and no there are so many different things Marfan can affect.I have never been a brain box but now i no more that my own Dr about Marfan.I have got to chat and email some real nice people with marfan throw the internet.


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MarfMan Comic Book Cover #5
Posted at 3:30 AM

And yes, you can indeed purchase MarfMan lunch boxes, t-shirts, posters and mousepads at the Marfan Life Online Shop!

Again, thanks Thomas Schrantz!

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Mary and sons Zeke and Isaac
Posted at 2:59 AM

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One more from John Hathaway
Posted at 2:30 AM
I wanted to try and submit something "original" for the site. So I focused on my new point of view as a parent.

When you're a Marfan married to a tall person, it makes denial all the easier for relatives, regarding your kids:
"Oh, look what long fingers she has!"
"Oh, look what long toes she has!"
"Oh, she's so tall!"
"Oh, she's so thin!"
Then her sister is born.
"Oh, she's so chubby!"
(and no one says anything about how tall or long she is)

I'd always thought that Marfan was pretty much cut-and-dried, within a family at least. I knew there would be some minor variance, but I didn't realize until recent years how much it can vary within a family.
Like Mary Kossack's story, there was obviously something "wrong with me" from the day I was born. I was diagnosed at age 2. I've always been weaker, more easily tired than my peers.
Now, after diagnosis, a good part of that was the beta blockers, but it's also just from Marfan.
Don't get me wrong--I got into my share of trouble as a kid--but I always had a point where I'd wear down.
Now, my daughter's like the inversion of me. My mom, my wife and the ophthalmologist have all seen her lenses "flicker" (though the ophthalmologist didn't think it was indicative of Marfan for some reason). She sees very well, though, whereas I was blind as a bat.
She's a ball of fire, tearing around, always doing something, and she doesn't have an "off" switch.
But, on the other hand, if you look at her ,and you know what you're looking at, you can *see* that she has Marfan. Her fingers are "just so long." Her arms are "just so long". On the rare occasino she has her hands down at her side, they practically reach her knees.
She towers above little kids who are years older than she. ("Oh, but her mom's tall." "Yeah, and we have lots of tall friends, whose kids are shorter than she is"). She's two-and-a-half years old, and there is no longer a "safe" place in the house to keep things out of reach.
I'd always figured I'd know what to expect when it came to having a kid with Marfan. I'd also figured that having a kid with Marfan would be, in a way, "easier," because he or she would be as easily worn out as I've always been.
I'd tell my parents, "I think I've had enough fun for today," and I still usually have that feeling when I've been awake for about 3 hours.
But, nope. You can never be prepared, when it comes to kids.
I've got a kid with the reach, flexibility and thinness of a Marf, but (thankfully) without any cardiovascular manifestations as of yet. So she gets into *tons* of trouble.
But then, we can just feel her little bones flex and creak just holding her hand or picking her up.
Her chestbone is sunken in--a problem I never had.
Just holding her now evokes feelings of parental worry for my wife and me both.

Our biggest fear is that she'll live in "medical limbo," waiting years for a definitive diagnosis--that we'll take for granted that she's "healthy," and she'll be in for a horrible shock one day, or that we'll assume she's a Marf and stunt her personal development when she turns out to be "fine."

Never take anything for granted!

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From John Hathaway
Posted at 1:59 AM
With apologies to Scott English:

"I remember all my life;
Pain came down as cold as ice
Shadows of a Marfan
A face through a window
Crying in the night,
The night turns into

Morning, just another day,
Healthy people pass my way.
Looking at their backs,
I see a straight spine.
I never realized how
Unhappy it makes me,

My back hurts!
And it's bent, 'cause
I've got scoliosis.
Can I send it away?
My back hurts!
In the morning,
It hurts me
The mostest.
I don't need this today,
My back hurts."

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John and Alexandra H.
Posted at 1:31 AM

John Hathaway March 1, 2004 holding is daughter, Alexandra, on the ocassion of the birth of a sister for Alexandra, and a fairly recent photo of Alexandra showing her Marfan-like features. (Alexandra has not yet been diagnosed with the Marfan syndrome, but her father says she does have some of the symptoms).

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John Hathaway
Posted at 12:59 AM

This is John Hathaway, known to many in the Marfan community as the model for the picture book, "How John Was Unique" when he was younger. Here is a picture of him on his 15th birthday (he thinks).

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Mary and one of her sons, Zeke
Posted at 12:38 AM
When my oldest son was 4 years old, I thought that something was not right. The doctor told me that everything was fine.

When my son was 11 years old, I thought that something was not right. The doctor told me that he might be depressed and to seek therapy. I did.

When my son was 12 years old, I thought that something was not right. The doctor told me that my son needed more sunshine. He received it.

When my son was 20 years old, I thought that something was not right. The doctor told me that my son had Marfan Syndrome, and that his younger brother had Marfan Syndrome and that I, his Mom, had Marfan Syndrome.

Morale of the story...Mom's listen to your heart and keep seeking answers.

-Mary Kassock

Mary's son Zeke demonstrates a fun magic trick for those with marfan syndrome who are very flexible. Go to the link and see! (You'll need Windows Media Player, and it may take a while to load.)

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Quick note...
Posted at 12:24 AM
Just wanted to let people know that after I threatened to post more pictures of myself, I got a quite a few submissions from other people. (Yay!) If your post or picture doesn't show up soon, don't worry -- it will. You'll see it in the morning if not tonight. Thanks, everyone!
Jeanette

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Arthur and Nancy, 2 Marfs?
Posted at 11:59 PM

Can anyone tell me (remember) what the reference to Arthur is? Post in the comments!

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Zoie again
Posted at 11:26 PM

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MarfMan Comic Book Cover #4
Posted at 10:59 PM

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Zoie!
Posted at 10:31 PM

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Marfan Haiku by Bryan Jones
Posted at 10:00 PM
deep down in my soul
in my dreams where I'm normal
i win marathons

i love the winter.
layers of clothing to hide
my layers of scars

like clockwork i know
something new comes loose inside
every five years

I have seen my heart.
It is the largest muscle
on my skinny self

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Haley and her older brother Adam
Posted at 9:30 PM

Photo #3 (adam/haley)
Often, people assume that Haley and her brother, Adam are twins! They are actually 2+ years apart!

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Haley
Posted at 9:01 PM

Photo #1 (Haleybaby)
Look at those long fingers! Those were the first words I heard when my daughter, Haley was born. Little did we know that these long fingers were a tell-tale sign of the Marfan syndrome. 2 1/2 years after she was born, Haley was diagnosed with Marfan syndrome -- not because of her long, spiderlike fingers, but due to her flexible flat feet, another characteristic of individuals with Marfan syndrome.

Photo #2 (Haley4)
Today, Haley is a happy, energetic 4 1/2-year-old. So far, the disorder has affected her skeletal and cardiovascular systems.

This includes:

• Extremely tall for her age


• Hypermobile


• Flexible Flat Feet


• Scoliosis


• Long Armspan


• Down-slanted, Deepset Eyes


• High Arched Palatte


• Enlarged Aorta


• Mitral Valve Prolapse

While she tends to tire easily, Haley does not let the disorder slow her down. She loves to ride her bike, go swimming, sing, dance, play with her Barbies and her big brother.


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Joanne and Mike
Posted at 8:30 PM

Mike and his mom Joanne at the 2004 National Marfan Foundation conference

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Joey
Posted at 7:59 PM

A picture to share of Joey, Severe Infantile Marfan Mutation, taken in Jan when he got his new puppy. Joey will be 18 this Oct. and tho' he has had lots of stuff happen , 18 surgeries to date, vent dependent, wheel-chair bound, he is still a cool kid with a great attitude and zest for life. God has been there for all of us and has also blessed Joey with being a little younger mentally , it makes some of the stuff he has to deal with a little easier. He is not an 18 yrs old in maturity but earned his Varsity letter this yr in Academics. 6 trips to the OR throughout the school yr and he kept his grades up. What a kid !! He also played on a baseball team this yr. A dream come true for him . It was a Challenge team and all the kids were terrific.

Joey has been treated at Children's Hosp. in Philadelphia since he was 10 mos old and continues to be treated there. All surgeries have been done at CHOP, as well as all the breakthrough's in his unique care. They all still marvel when he pulls thru' yet another traumatic episode in the continuing "Saga of Joey's Life." Stay tuned, we plan for a full and long life ahead.

Big deal for him this year is he gets to vote !!!

Joyce in VA

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Roberta and Susan
Posted at 7:31 PM
Oh, you guys are funny. I threaten to post more pictures of myself, and so you start sending stuff! Thanks! Keep 'em coming!

The woman in the coat is Roberta, the mother of Susan and Nancy, from a post below. The girl in the plaid skirt is Susan. (We think Roberta liked plaid!) Both Roberta and Susan had the Marfan syndrome.

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Comments
Posted at 7:00 PM
Hey, I think I figured out why people haven't been posting comments! I've added an explanation above (in purple). I know, it's confusing. The comments are part of Blogger, rather than part of Project-Blog. Blogger is the service I use to publish this blog. When you go to post a comment, you're asked to sign in. Well, it doesn't explain too well what you are signing in to. You would be signing into Blogger, if you had a Blogger account. I'm thinking most people reading this do not have Blogger accounts. Therefore, you can't sign in or you have to create a whole new account. You can post Anonymously, though, and it would sure be nice to get some comments! Just click on "Or post anonymously" when you get to that part. You can sign your name in the body of the comment, of course.

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Me at 10 or 11
Posted at 6:32 PM
Okay, I'm running out of stuff from other people, so you get to see more pictures of me! Here are two pictures apparently around the same time, 1968 or 1969. I was eleven years old.

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Marfan Support Group Ireland
Posted at 5:59 PM
Here is a link to the Marfan Support Group Ireland
Hi over there in Ireland!


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MarfMan Comic Book Cover #3
Posted at 5:30 PM

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Mark
Posted at 4:59 PM

Click to enlarge


Here is Mark, my little prince. We adopted Mark from Guatemala when he was 6 months old and within two months of having him in our lives, we were lucky enough to find out that he has Marfan. I say lucky, because since we know, we'll be able to take care of him the way he needs to be taken care of.

As far as adoption goes, it is the most wonderful process! This little boy entered our hearts before he was even in our arms. And when we held him for the first time, it was overwhelming. Adopt! Let love into your life!

As far as Marfan, it was just a fluke that we found out. Mark was being taken care of for the afternoon by a relative when we were visiting in-laws in upstate NY. She went for a power-walk every day with a neighbor who happened to be a pediatrician. "Want me to ask her anything?" she offered. "Sure," we replied, "ask her if she has any suggestions about his strengthening fingers since he's always picking up Cheerios with his knuckles." The friend mentioned Marfan. The relative told my in-laws about a week or two later. The in-laws told us a few weeks later. (They waited until they had learned a little bit about it, and we couldn't believe they waited!!! "It's our child! Let us determine if it is important!") We checked the web, and then checked off item after item on the 'Do you have Marfan?' check lists. Yes, double jointed. Yes, long fingers and toes. Yes, big floppy ears. Yes, taller than average. We called our pediatrician immediately and he told us not to worry. "He doesn't have Marfan." We were ready to take it further when about a week or two later he called us back and told gave us the names of a cardiologist, geneticist and ophthalmologist at Childrens Hospital he wanted us to see right away. Nothing like a doctor who does his homework and isn't afraid to change his mind!

So, now we know what we're dealing with and although we get a little overly concerned at times and tend to over-react (we visited the ER last weekend when we really didn't have to), it's all about taking the best care of our beautiful boy. We'll continue to over-react and in great part thanks to a wonderful list serve, are just about as educated on Marfan as we can be. I find that the more educated you are, the more careful you are, hence the occasional over-reaction! But as all of our wonderful doctors know, we would rather be safe than sorry.

Inez

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Height and celebrity rankings
Posted at 4:29 PM
Here is a web page I found that has resources about height. The page is brought to you by Dan who is 6'6". I don't think he has Marfan, but he's tall, so this site may be of interest to some!

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Shawn Heldt Memorial Garden Walk
Posted at 3:57 PM

Click to enlarge

The Shawn Heldt Memorial Garden Walk Sunday in Omaha's Morton Meadows neighborhood was a fund-raiser for the National Marfan Foundation.

From Shawn's mother Sherry: "We have just finished having a Shawn Heldt Memorial Garden Walk in memory of our son Shawn who died on Dec 11, 2000 at the age of 22 of an aortic disection and aneurysm after being misdiagnoised at our Local hospital. We raised $702.00 for Education and Awareness/Emergency Medicine Campaign for the NMF. We also passed out The Marfan syndrome fact sheet and had a easel full of information on the symptoms of Marfan's, we hope this has help raise awareness in our community.

This is a picture of all those people who donated their yards to walk through to make this Garden walk successful, including Roger and I.

Good going, Sherry and Roger!!


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Time goes by fast...
Posted at 3:29 PM
It's time for me to post something, but I've been working on some photos, getting them ready to blog. I don't have anything ready right yet, but I have to blog something to show I'm still here. I'm still here! (And I thought I was going to have plenty of time to visit other bloggers' sites! I will, eventually. Just a bit bogged down right now. There are some other good blogs out there, blogging today for other good charities! Please check them out and consider sponsoring them!

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Tall trees! (more tall links from Todd)
Posted at 2:58 PM

• World's talles tree at 367.5 feet


• World's tallest ever Christmas tree


• Tallest lighted living Christmas tree


• World's tallest omelet
  

Okay, the last one is a little off the topic of tall trees.

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Thank goodness for orthodontists!
Posted at 2:29 PM

They used to call me Fang!
(Have I changed that much? I don't think so.)

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MarfMan Comic Book Cover #2
Posted at 2:01 PM

Scroll down for another great MarfMan Comic Book Cover! Come back later today for more!

See, Todd? I told you he was naked in one of them!

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Marfan sisters from the fifties
Posted at 1:28 PM

The two girls in plaid, Susan and Nancy, are sisters with the Marfan syndrome. This picture was taken back in 1952.
Thanks, Nancy!

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MarfMan story
Posted at 1:00 PM
Make sure you read the comment (below) on the MarfMan comic book cover 1! (Scroll down. You'll see it). Find out how MarfMan came to be!

Time is going by fast. After the Blogathon last year, I made a note to myself to get things ready ahead of time so all I had to do was post every half hour. But did I listen to myself? Nope! I'm resizing and optimizing photos between posts, trying to grab a bite to eat for lunch, kicking myself for not being as organized as I should be! 19 hours left to go!

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Favorite Doctors Quotes
Posted at 12:30 PM
Contributed by Georgia

Georgia

(Actual quotes given by my doctors)

"It's not your fault your a clutz. Bodies just aren't supposed to move that way."

"It's probably the Marfans, when it doubt it's usually that."

"It's not like you have a normal body."

"I don't even want to know how you got in that position."

"Marfan's Syndrome is not spelled with an F. I should know. I've had my medical degree for 10 years now." (and I've had the disease for 28 years now)

"It's really impressive how freaky your joints are." ...(geee thanks)

"You don't have Marfans. You're not thin enough."

"It's just a little scar and you have so many already."

"So what makes you think you have Marfans?" (oh I just like the sound of it)


And as a special bonus a quote given TO my doctor from my dear husband

If you think that joint bends far you should look at her jaw I keep waiting for her to unhinge it like a snake


And said by the nurse when the doctor left the room in the ER

"You do know they don't have any idea what to do with you. Marfan's baffles them." (trust me it baffles us too.)

"Have you thought about a bigger hospital?"

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In memory of Shawn Eric Heldt
Posted at 11:59 AM

In Memory of:
Shawn Eric Heldt
January 2, 1978 - December 11, 2000
Aortic dissection & Aneurysm

A Special Day on Earth
There was a day of celebration the day you were born,
The Angels stood together and blew their great horns.
God created an Angel to be sent here to Earth,
We all knew it was you, they were announcing your birth.
God knew that all of us would be touched by your love,
So, we celebrate you, your a gift from above.
You have given us so much, much more than you know,
Your love, forever giving, has taught us to grow.
In God's great wisdom He knew what we needed, tis true,
For God's Special Angel, Shawn, is YOU!

I wrote this in memory of Shawn 1/2/78 - 12/11/00, but all of our Special Angels will certainly fit where Shawn's name is.

I dedicate this to all of your Special Angels. Hope this touches you heart in a Special way.

Hugs, Sherry

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Man's Risky Heart Op Choice
Posted at 11:30 AM
Here is an article from a newspaper in Wakefield in the United Kingdom. Let's all hope this guy's operation goes well!

Wakefield Today: Man's Risky Heart Operation Choice: "Carl was diagnosed with the syndrome when he was 12 years old after a routine check at the doctors. He underwent tests at Pinderfields which confirmed he had Marfan's.
Carl said: 'Previous doctors had put my breathing difficulties down to asthma. When the tests came back I didn't really think much of it - even when it was explained to me."

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Tall, taller, tallest!
Posted at 11:07 AM
Being tall (mostly), people with Marfan seem to have an affinity to other things tall. Here are some "World's Tallest" things:

• World's tallest thermometer


• World's tallest buildings


• World's tallest man, Robert Pershing Wadlow (who did not have the Marfan syndrome, but whose abnormal pituitary gland wouldn't let him stop growing)

More tall links to come! Thanks, Todd W.!

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MarfMan returns!
Posted at 10:29 AM
Remember MarfMan from last year's Blogathon? He's back! This year as a star of his own comic book covers! Here's volume no. 1 cover

click to enlarge

Thanks, MarfMan, AKA Thomas Schranz!

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Marfan Israel
Posted at 10:00 AM

Information about the Marfan syndrome is Hebrew can be found at Marfan Israel. Here is the page as a picture, so if you don't have Hebrew installed in your browser, you can see the Hebrew letters.

Miriam writes "We are about 10 people that have Marfan and meet once in a few weeks our goal is to have more people with Marfan so we can have a Marfan clinic in one of the hospital here, I have now about 50 people on my list, so we wrote a leaflet and we give it to nurses doctors and others,
the page is the leaflet."

Miriam also has her own website here.

Thanks, Miriam!

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Unspoken Conversations, by Georgia
Posted at 9:27 AM
by Georgia, in memory of her brother John who died when he was 19 years old from an aortic dissection due to Marfan

John Morrell III

Monologue
Your heart ripped right in two, at least thats what the doctors said. A dissected aorta at least thats thier technical name. Gotta make it sound pretty right.

It Split right open, a broken heart how apropo. Sometimes I wonder why your broken heart killed you. Mine broke that night, it just didn't know enough to stop beating.

I grilled those poor doctors. Grilled them as though answers could bring you back to life. You know what they tried to say? "A weak heart." A weak heart? A weak heart ! They didn't know you very well did they.Nothing about your heart was weak.

Well then again they didn't know you at all did they. By the time they met you, you were just a body to them, A cadaver.

I challenged them. Of cource I did. I had a rush of bravery spurned by the nobility of honoring the dead. That combined with a grief loostened tongue. You shoulda heard me I sounded like, well I sounded like mom when she would mortify us with her loud maternal defense of our every action. Remember?

Remember how we'd try to dissapear into the background or see who the ground would swallow up first during her motherly tiraids. Well.....That was me. Your dear sweet quiet sister at her absolute finest. It worked though. Who knows maybe mom was right all along. The doctors stopped sugar coating the acid. They said your heart...well it grew and grew until it pulled apart. Like those water balloons we'd fling at each other. Remember how if we let them fill to long they'd just get bigger and thinner till. POP all that would be left was that latex ring around the faucet.

That I could Buy. Your heart was to big.

God the stories I could tell. Lost strays, hurting friends, desperate strangers, I always said you kept them all in your heart. Always wanting to help.

Guess I was right huh. You stored so much in your heart, it just kept growing to fit it all in

It just kept growing

your heart wore itself out.Want to know my theory? It wasn't because it was weak. You used your heart just as much as most people do in a lifetime. You just did it in 19 years. A lifetime of love in 19 years. 19 years. I have 19 years of storys on you. 19 years of being a big sister. 19 years of sharing my life with you.. 19 years of knowing the best thing to happen in my life.

Did you know I even knew that the day they brought you home?

Most kids, they hate the new baby and run away FROM it. Me they caught packing up your baby things. Why? when they asked I just explained " you don't love me anymore, now that you've got the baby.But since it's not his fault so I was running away with but he's coming with ME.

See I always new you were meant to be in my life.

I guess it's about that time. I'm gonna have to go. Sorry Bro.

You know what? I was thinking I hope when God fixed your heart up there he super sized it. You deserve the biggest heart they have in heaven. After all you had one of the biggest on earth.


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I'm flexible in my phoning habits
Posted at 8:57 AM
This is a picture of me when I was a teen, monopolizing our family phone.

Click to enlarge

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Thanks to all!
Posted at 8:28 AM
Before I start blogging Marfan-related posts, I want to thank a number of people.

• First and foremost Brent and Wendy for starting Project Blog when they heard the Blogathon folks would be taking 2004 off to improve their stuff. I know it's been a huge job getting this together!
• Secondly and emphatically, all those who have sent me material to blog or who will be sending me things throughout the day today.
• Thirdly and very gratefully, all those who have sponsored me so far and who will be adding pledges.
• Fourthly, to John and Lisa Ballinger for John's picking up my food order at the Williamsburg Farmers Market today while I stay here at home! (Good food is important!)

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Project Blog Begins!
Posted at 7:58 AM
Today I will be updating this page every half hour on the half hour (or as near as I can make it) for 24 hours straight. I am participating in a blogging marathon called Project Blog in which people with web logs (blogs) ask for sponsors to pledge donations to a charity if the blogger can stay up all day and night and keep to the schedule of updating.

Sure, sitting in front of a computer all day (which is what I'm going to be doing) is not in any way as strenuous or complicated as organizing and running a marathon, walk-a-thon, bike-a-thon, gala or other event where numerous people are involved in getting supplies and publicity and food prepared, but it is a way to get the word out about the Marfan syndrome to people who may never have heard of it before. And it's something I can do, since I have little time, little money and little courage when it comes to thinking of organizing a big event!

It's also a way to show the public and other people with Marfan in their families what people with the Marfan syndrome are like. In most respects, we're not much different from other people. In other respects, we are. Throughout the day, I hope to blog offerings from the Marfan community to show some tiny slices of our lives.

Please post comments (they may help keep me awake!) and, if you have the Marfan syndrome yourself or in your family, please consider sending me material to blog!

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Julie Kurnitz
Posted at 1:26 AM

Julie Kurnitz passed away Thursday evening surrounded by good friends and the love of many people around the world. Julie was a Broadway actress and also played talk show host Irene in Woody Allen's movie, Radio Days. She wrote and starred in the hilarious but sobering one-woman musical play "Clinical Trials." She had allowed me to post one of the songs from it, I Stand in the Ruins, in last year's Blogathon. Julie was 61.

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Rare but Real: How to tell if you have Marfan syndrome
Posted at 1:15 AM
Rare but Real, from The Patriot Ledger at SouthofBoston.com: "When [Claire] Avitabile was about 4 years old, Helms noticed she held books close to her face to see them. Avitabile was brought to an ophthalmologist who said she had a dislocated lens. The ophthalmologist also knew Avitabile's extreme height, long arms and legs, plus the dislocated lens, were signs of a potentially fatal disease - Marfan syndrome."

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Marfan syndrome interview in Pensacola, Florida
Posted at 1:11 AM
Marfan syndrome interview with Lisa Harrell and Fern from Pensacola, Florida. Click on "3 in the Morning" on the left-hand panel, then download the .mov file for Marfan Syndrome to view the interview. If you have dial-up access, you may have difficulty viewing this. I have not been able to, myself, but others have had luck and have said the interview is great.

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Walking Tall
Posted at 5:33 PM
"Mike Harrison has donated two wooden pigs to Wetheriggs, and returns each year to Oasis, centre, to remember his Lakes holiday with Nicky."

...snip!...

"He met Nicky Rose, who was 6ft 2in, nine years ago at an event organised by the Tall Persons Club of Great Britain.

"The couple spent three-and-a-half blissful years together until Nicky died as a result of her Marfan’s Syndrome, a rare genetic condition." ...snip!... "Mike makes a yearly pilgrimage back to the Lake District where he lost the love of his life in January 1999."


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Miss Ladysmith [from S.Africa] acquitted of culpable homicide
Posted at 5:27 PM
[The Marfan syndrome has been appearing in stories of crime as late.]

"The state did not consider Palvie's confession at the accident site that she drove over her boyfriend, as she was hysterical at the time."

..snip!..

"However, Willemse said that the latter's evidence that he had seen Fouracres running down the road before he spun around and collapsed should not be ignored. "This happened before a car came into the picture," he pointed out.

This evidence could correspond with Van Schalkwyk's theory that Fouracres could have suffered from the rare Marfan disease."


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Garden walks [in Nebraska] offer glimpse of summer blooms
Posted at 5:22 PM
This is old news -- the walk has already happened -- but it is an example of a way one can help to raise money for the National Marfan Foundation, which in turn helps those of us with the Marfan syndrome.

The Shawn Heldt Memorial Garden Walk [last] Sunday in Omaha's Morton Meadows neighborhood is a fund-raiser for the National Marfan Foundation. Gardens, open from 11 a.m. to 3 p.m., are at 4512 Pierce St., 4504 Pierce St., 4548 Mason St. and 3302 Woolworth Ave. Tickets, $4, may be purchased at any of the gardens.



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Robber allowed to seek review of caning order
Posted at 5:04 PM
A CONVICTED robber sentenced to 12 strokes of the cane has been allowed by the High Court to file for a hearing to have the caning order reviewed.

Justice Kan Ting Chiu granted approval for Tan Eng Chye, 23, to proceed with his suit for a full review, as Tan fears caning would cause him serious harm because he suffers from the rare medical condition called Marfan's syndrome.


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