Meet Beautiful ‘M’: A Marfans story.

Isaiah Austin has Marfan Syndrome and won’t be able to play professional basketball in the NBA. That dream is over. But due to his talent and popularity he has many opportunities to remain in the sport he loves from coaching at his alma mater to a job with the NBA once he finishes school.

Isaiah Austin with NBA Commissioner

You’re wondering why you should you care, right? Ronovan doesn’t write about sports. Keep reading. How often do I not have a madness to my method?

 

Marfan and Beautiful ‘M’

by: Ronovan

“About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups.”-marfan.org

 

Now take a look at what Marfan Syndrome is:

 

“Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly.” “Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life-threatening. The lungs, skin and nervous system may also be affected. Marfan syndrome does not affect intelligence.”-marfan.org

 

 

For something most of us that has never heard of it, we can tell by that simple blurb this is a very serious disorder.

 

 

What if you aren’t a superstar athlete . . . in a popular ‘sport’?

 

 

First of all, don’t think I am knocking Isaiah Austin. He didn’t ask for Marfan or the opportunities coming his way. That’s not it. Now that he’s drawn attention to Marfan I want to draw attention to another side of it.

Meet ‘M’. She’s not a superstar yet, well not to the world but she is to those who know and love her, but she is a competitive athlete. She’s been in competitive cheerleYoung Cheerleader with Marfanading for most of her life.

Some don’t realize how tough competitive cheer is. ‘M’ has been a flyer. Meaning she is the one that is thrown in the air and just prays she is caught. She has to spin and do all sorts of things while up there and still find her mark on the way down M-InAirwhile trying to stay in sync with the other flyers.

On top of that she also does the gymnastic tumbling and has to be super strong in her core, abdomen in order to stay stiff as a board while standing up with people holding her in the air. Or how about you have to support someone as they jump over your head while you are in the air? Think it’s easy? Try it. Plus she also has to hold others in the air while she is up on peoples hands because she is so strong. You know that person in the middle of all those people up in the air that others are hanging onto? That’s ‘M’.

‘M’ is not so little any longer, she’s 13 now but she will always be little to me because I’ve known her, her sisters and her mother for several years no. Oh, and she is beautiful. She’s actually taller than she M-Flipshould be because of Marfan Syndrome. Imagine not only having to worry about being dropped and cracking your spine or neck you also have to deal with what Marfan does to you. And she still does it every day.

 

I don’t know how many people can leap into the air and land in a plank position. I hurt thinking about it. And with Marfan Syndrome, especially after reading about it, I have a new respect for her toughness, if it’s possible for me to respect her more than I already do.

 

But things are not good. The pain is getting to her. The stress of being one of the ones counted to hold the team together is getting to her. And all during her time of being 12-13. She’s beyond talented and could go very far in competitive cheerleading and end up with a scholarship. But Marfans is already taking its toll. Imagine the conversation.

“I’m okay, Mom. It’s just the usual,” says ‘M’.

Mom looks at her little girl rubbing her legs. “If you say so.” She doesn’t want to discourage her. She’s always let her girls go for what they want. But how long do you let them go before it’s too much. The thought is there.

“How about some ice cream?” ‘M’ asks.

“You got it.”

 

‘M’ is accustomed to the pain now. She smiles, she cares for her mother, helps her mother with everything (when not acting like the stereotypical teen). Her mother comes home from work and this little girl has already done the laundry. She’s hurting though. She won’t let on what it feels like to be in pain and know you have a syndrome, but I can relate.

 

 

It’s always there in the back of your mind. I’m an adult and I deal with it. I wonder what it does to her. Does she think about her future?

 

 

Isaiah Austin’s Marfans was discovered upon testing before the NBA draft. This little girl’s has been evident for some time now.

 

 

Is there a cure? No. Some aspects require surgery while some it’s just taking care of it as it goes along. It’s a quiet thing that many people don’t even know about. I have Fibromyalgia, or Chronic Pain/Fatigue. I don’t like the word Syndrome. It sounds so unreal somehow. “Oh, you have a syndrome.” It sounds like a mental thing.

 

 

Pain and possible death isn’t a mental thing. It’s reality. Study about Marfans. Pay attention to your children. I’m not saying look for Marfans in them but know what it is so if your child says something about a feeling or something then that something will click in your mind.

 

 

Much Respect

Ronovan

 

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10 thoughts on “Meet Beautiful ‘M’: A Marfans story.

  1. Thank you for educating us about Marfan Syndrome and for the story of beautiful M. 🙂 Such bravery at such a young age.

    I know pain too well and he’s not anyone’s friend.

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  2. Hi Ronavan, interesting post. The lead character in my WiP has Marfan’s. I was surprised at how common it can be once I started researching. The Marfan’s organisation are being really helpful with their advice so I can cover this sensitively and factually correct.

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    • That’s one reason I didn’t go into details of it all and just the personal experiences I know of. I didn’t want to give false anything to people but just wanted to put it into peoples’ minds that is out there. The prevalence is surprising.

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