Fashion Meets Passion

Maya Angelou once said, “My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”

Those are such great words to live by. If we could all adopt this mentality our world would certainly be a much nicer place to live. I feel as though I already incorporate humor and style into my life and find myself compassionate about many things. Oftentimes our compassion leads us to our passion. Such is the reason for today’s post!

Lilly is no stranger to The Stylish Steed website. My god-daughter, Lilly, is a spirited and talented eight year old with spunk, sass, and stop-you-in-your-tracks eye rolls. She loves running track, looking sharp, entertaining a crowd of any size, and anything related to music. Other than running, she’s a lot like her Uncle Chad. I couldn’t love her more if she were my own flesh and blood!

Chad and Lilly

Lilly is very special…and not just to me! Lilly has a genetic disorder called Marfan syndrome, a 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. It’s kind of like pantyhose…it keeps everything where it should be. Lilly’s “pantyhose” are a little stretched out though, so they don’t hold things together as well as they should.

About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups. About 3 out of 4 people with Marfan syndrome inherit it, meaning they get the genetic mutation from a parent who has it. But some people with Marfan syndrome are the first in their family to have it; when this happens it is called a spontaneous mutation.

Like all individuals with Marfan syndrome, Lilly was born with it. Some people have a lot of Marfan features at birth or as young children – including serious conditions like aortic enlargement while others have fewer features when they are young and don’t develop aortic enlargement or other signs of Marfan syndrome until they are adults. Some features of Marfan syndrome, like those affecting the heart and blood vessels, bones or joints, can get worse over time. Marfan syndrome affects Lilly the most in her heart and vision. She makes regular visits to her cardiologist and updates her glasses frequently as her vision progressively deteriorates over time.

We were very lucky that a doctor knew about this rare disorder and spotted symptoms in Lilly at a very early age. Without early diagnosis and treatment, individuals with Marfan syndrome can be at risk for potentially life-threatening complications. The earlier some treatments are started, the better the outcomes are likely to be. We are extremely blessed and thankful for the early diagnosis that Lilly received.

It is through this diagnosis and continual doctor visits that Lilly and her family have become active with The Marfan Foundation. Throughout the year she meets with others affected by Marfan for support, to raise awareness through events, and to raise funds for The Marfan Foundation.

The Marfan chapter of which Lilly is involved is celebrating Marfan Awareness Month (February) and preparing for the Walk to Victory, a fundraising event that supports The Marfan Foundation research. Lilly and her involvement with The Marfan Foundation has become a passion for her entire family. It is because of that passion that Team Lilly and The Stylish Steed are partnering up to raise money and awareness of Marfan syndrome during the month of February. Beginning today, February 1, and extending through Monday, February 28, The Stylish Steed will be giving 100% of the profits from the sale of Stylish Steed Signature T-Shirts purchased to The Marfan Foundation in honor of Team Lilly! Take heart and do your part!

Simply visit The Stylish Steed online store and purchase yours today using the checkout code LILLY. Team Lilly and The Stylish Steed are excited about this partnership and can’t wait to see how great a donation she’ll be able to contribute because of your help!

Not only are you sharing in helping Lilly’s passion, but you’re also doing something else that Lilly loves….staying stylish!


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