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04 December 2009

Dreams Do Come True

I am so excited for tonight. Something wonderful is going to happen for my youngest brother and I can hardly wait to see one of his dreams coming true. He's been through some very difficult times and he is so deserving of something nice happening for him.

You see, my brother was born with a potentially life-threatening connective tissue disorder known as Marfan Syndrome. Marfan Syndrome can be life-threatening if it affects the heart as it does in my family. My father, me, one of my brothers and my daughter all have Marfan Syndrome, but my brother was dealt many of the more serious complications ...aortic valve replacement at age 14, a stroke at age 25, abdominal aneurysysms at age 30, and most recently bypass surgery on an artery leading to his brain. Yet, if you met him, you'd never know about all the difficult times that he's had. He truly lives in the moment and is such a joy to be around. He is my inspiration daily and although he may be hindered by the affects of the stroke he truly does not let this get him down. He fights on through the difficult times and is absolutely amazing .... and I am so honored to be his sister!

So....about the surprise!! He's going to meet Lebron James from the Cleveland Cavaliers when they play at home tonight in Cleveland! (Did I mention that he's a HUGE Cavs and Lebron fan!!) My uncle is taking him to the game. My brother thinks he has seats in 'the nosebleeds'. But, my uncle received courtside tickets from a very generous friend! That's not all! It has been arranged for LeBron to stop by and visit with my brother before the game. It'll probably just be a handshake....but that is more than enough! He will be so thrilled. (Now...with his heart problems...I certainly don't want him to get too excited! I told my parents to make sure he stays seated during all this excitement! :) ) The front office for the Cavs will also present my brother with a Cavs goodie bag of some sort. Folks have really come together to make this an exciting night for my brother and words alone cannot say how grateful I am to my mom, my uncle, the Cavs Organization, Lebron James, and the friend of my uncle who gave up his seats for tonight's game. (On ESPN BTW)

This will be a most memorable night for my brother for sure and I am so thankful for all who helped organize this special surprise. I'll keep you posted on how the night unfolds. Wish I could be there in person to see his reaction....but I'll have to wait until I hear from them all tomorrow.

Additional information on Marfans in case you are interested :

Here's an article that was written for our paper regarding a Marfans event in which I participated . It has some key points about the illness and how it affects people.

Here's another article that mentions heart-problems in the NBA and Marfans in particular:

Lastly, here's an article from Sports Illustrated calling Marfans the "Silent Killer"


Marfan Syndrome explained in 'my words' as it relates to my family and my brother in particular:

Marfan Syndrome is a connective tissue disorder. It can affect all parts of the body including the eyes, lungs, joints, blood vessels, etc. But, it is usually only life-threatening if it affects the heart, specifically the aorta - the largest artery in the body, as people with Marfans Syndrome can die from an aortic dissection or rupture of the aortic valve. If undiagnosed, many people with an aortic dissection will die within 48 hours if proper care is not given. Marfans patients are 250 times more likely to have an aortic dissection than people in the regular popularion.

Many people with Marfan Syndrome are tall....with an arm-span that is often longer than their height. They have long fingers and big hands which often make them great candidates for sports, especially basketball. But pediatricians, coaches and school nurses are being urged by the Marfan Organization to look for the tell-tale signs of Marfan Syndrome before these tall kids are pushed into potentially life-threatening sports and activities.

My brother was 14 at the time that we found out he had Marfan Syndrome. At 14, he was already 6'9" tall...the same height as my dad. Three basketball teams already had his name on paper to potentially play for them. Not knowing that his heart was a ticking time bomb. At 15 years old, my brother had open-heart surgery to replace his weakened aortic valve with an artificial valve.

He has subsequently had two additional surgeries to repair dissected portions of his aorta and a major artery leading to his brain. He also had surgery at the Cleveland Clinic to repair 3 abdominal aneursysyms. He is seen by a cardiolgoist regularly who performs CATScans and Echocardiograms to evaluate the strength of the vessels and arteries in his body.

If you know someone that fits the characteristics of Marfan Syndrome, definitely recommend that they talk to their doctor about visiting with a cardiologist for a very simple Echocardiogram. The test is painless and can aid in the diagnosis. With preventative care and routine cardiology visits, a person with Marfans can now have a life expectancy equal to that of the average population.

20 comments:

Beth said...

What a beautiful tribute to your brother, Kristen! I hope he has the time of his life at the game. He certainly deserves it!!!

Debbi Andersen said...

OMG how wonderful!!!!! I was tearing up with excitement for him and i dont even know your brother!! I look forward to hearing the follow up story!!! Those involved are all blessings!!!

A Painting a Day by Kristen Stein said...

I know! I get teary-eyed too...but mostly because I know how very exciting it will be for him to be so close to a team and game that he adores. (Not to mention getting to meat one of his idols!)

my little Aura said...

I fell a little excited too
All the best for you and your brother :)

Anonymous said...

Hi Kristen,
I hope your brother has a fantastic time with the best view and the huge bonus of meeting his idol... good health to all of you
Love Debra (AllThingsPretty) x

Sara at Soap Rehab said...

Ohmygosh, how exciting for him!!! Wonderful! :)

Carla - Cobweb Corner said...

This is just a wonderful post. Hope we get to hear about his reaction. So happy for your family to have this experience.

A Painting a Day by Kristen Stein said...

He's called to say that he's in his seat and can't believe that some of the players are just a few seats away. He's a bit overwhelmed for sure. Don't know yet if he's met the players, but maybe I'll be updated by my parents again tonight. Otherwise, I'll have to wait until tomorrow! :)

The game is on ESPN tonight at 8pm EST

Design Knit Fun said...

Very exciting for your brother! and thank you for sharing all the health information as well. Always like learning about something new to watch for symptoms of - as well as hearing stories about people treating it and taking great preventative care of their health!

marfmom said...

Oh my goodness how great! I am so happy that your brother gets this opportunity! I came across your blog via Google Alerts for Marfan. I have Marfan too, and used to live in Cleveland. Are you familiar with the Marfan group there? My friend Kristen runs it. Anyway, always nice to meet another Marf! :-)


~ Maya
http://marfmom.wordpress.com
http://nmfconnect.marfan.org

A Painting a Day by Kristen Stein said...

Hi Maya- I'm so glad you found my blog. I will check out your site as well. I am not familiar with the Cleveland Marfans group, but I know there are a lot of great support groups across the country. It's nice that folks support one another in so many ways.

Best of luck to you and your family. -kristen

Suzanne in TX said...

Kristen--that is so exciting! I hope your uncle has his camera on hand and ready! Your brother will be blown away, I bet. Can't wait to hear more about the evening!
Thanks for enlightening us about Marfan Syndrome.

Bonnie, Original Art Studio said...

A lovely and loving tribute to your brother. What a devastating illness. We just don't know what people are coping with.

I'm so glad your brother was being honoured in this special way. Hope he has a wonderful time. He certainly has a wonderful sister.

FashionTouch said...

Very-very happy for your brother! He should have lots of fun and I am sure she will so much enjoy the game!!!

Momma Goddess Treasures said...

Awesome for sure!!! I'm so happy he will have this little joy in his life! OMG! I can't imagine how excited he will be and wait for the stories!!

earthexpressions said...

Kristen, what a wonderful sister you are, thanks for sharing this story and information about marfan with us, I never heard of this illness before, now I will pay more attention when see people with those characteristics. Hope your brother has a wonderful time, I would love to see his pictures at that moment :) All the happiness for you all. Blessings, Susy.

Felicia Kramer said...

What a sweet story! Your love for your brother just pours off the page. I am somewhat familiar with Marfan because I have scoliosis and the two seem to be linked sometimes.

I'll look forward to hearing the whole story of his night at the game.

Paper Squid said...

Kristen I agree with all the comments! I am so so happy for your brother and this awesome opportunity (update us on how it all went!) So great and very cool event.

Becca said...

Thank you Kristen, for sharing this with us. Working in pharmacies I meet people all the time that have been faced with many challenges in life. I always find the ones that are given the biggest challenges are kind, generous and in short beautiful souls. I am sure your brother will treasure this suprise forever.

Nishant said...

He certainly deserves it!!!

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