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.
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