01 Mar 2015

Celebrate Life & Do Something: Life with a Rare Condition

1 Comment CAH, Everyday, Kids, Parenting, Raising Children, Uncategorized

“The world is a dangerous place; not because of those who do evil, but because of those who look on and do nothing.”

Albert Einstein


Today is February 28. Only month in a year that we have 28 days, sometimes 29. Crazy, I know. But do you know why we have a leap year?

A common year has 365 days and a leap year 366 days, with the extra, or intercalary, day designated as February 29. A leap year occurs every four years to help synchronize the calendar year with the solar year, or the length of time it takes the earth to complete its orbit about the sun, which is about 365¼ days.

Without the extra 5 hours, 48 minutes, and 46 seconds that is needed to make the cycle complete, time would be off. Everything would be out of sync. The stars wouldn’t align and the seasons, eventually would be off. It just wouldn’t be “right.” It’s a rare day that February 29th, but we all accept it and celebrate the extra day we get every 4 years.


Shouldn’t everyday on Earth be a celebration? We’re alive, right? That’s exactly how I feel about my kids. They are mine to celebrate and mine to protect. Unique in their own ways, but exactly who they are because of what makes them…them. And without them, for me, and many people who love them, the world wouldn’t be what it is without them either. We celebrate life, the normal and realize life is precious everyday.


Today, February 28 is National Rare Disease Day. It’s a day often uncelebrated and really not known. But to me, it’s a day to celebrate my family and give others a glimpse into our life.

I hate (and yes I really do hate) the word disease. I like the word condition. It doesn’t sound so bad, I guess. But none the less, Congenital Adrenal Hyperplasia is considered such and it’s what we have learned to live with, deal with and manage for the past 10 years.


It’s not easy. It’s not hard. It is what it is. It is life. We have always chose to live with this condition in a positive way because there are many other cards we could have been dealt and this one still doesn’t seem so bad. We do consider ourselves the lucky ones.


My reason for this post is to make YOU more aware of our condition and other rare diseases and rare cancers that many people battle every day. They battle these conditions with sometimes no one to fight for them because there is little or no research to help them win the battle. Families with loved ones try to fight for research and a cure, but many warriors are lost on the epic journey.

Do something.

We all try to do our part to protect these diamonds we have found. They are diamonds because the are rare and shine so bright in our lives. My three diamonds are the reason I advocate for awareness and give hope and friendship to others who are walking in my shoes.


In May, I have the honor of being recognized by the CARES Foundation for my contribution. I am humbled and honored. Any parent would do what I do. (I do have something planned soon that I’ll let you know about if you feel so compelled to help raise money for the CARES Foundation.)

And this year my sister and her husband are raising money for Cycle for Survival, which is the national movement to beat rare cancers. 100% of funds raised go directly to research at Memorial Sloan Kettering Cancer Center within six months of the events.


In just eight years, Cycle for Survival has raised $71.7 million for rare cancer research, and funded more than 100 clinical trials, studies, and transformational research initiatives. To the families that live and have lost loved ones with rare cancers, this is hope that others might not endure the same fate.

A “rare cancer” is one with a prevalence of fewer than 200,000 affected individuals in the United States. But when you put all of these rare cancer types together, they account for approximately half of all cancer diagnoses.

My sister and brother-in-law have decided to be a voice for the diamonds who need it most. They’ve even rallied their friends to join them in this movement and are raising money for those who need the research most.

Knowledge is power. And learning as much as we can about these rare conditions will eventually save lives. And hopefully, you’ll use your powers for good and maybe you can do something someday for someone that needs your help.

To everyone who supports Jake, Shelby and Abby, we thank you from the bottom of our heart.

To learn more about CAH and how to support the CARES Foundation, click here.

To learn more about Cycle For Survival or to give to Gina and Christian Litke’s Cycle For Survival Team “Oh, Boy, The Host Is Hot” click here.



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Marisa is a Mama to 4 kids and resides in Tampa, Florida with her family. Connect with her on Twitter @TampaMama to learn more about Tampa Bay and things to do with kids, Florida family travel, travel adventures and tips or her secret parenting tips for staying alive while wrangling 4 kids. She has a "official" business background in marketing + PR + events, but now plays daily with social media strategy, brand development and digital media. Days are long. Life is short.
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One Response to “Celebrate Life & Do Something: Life with a Rare Condition”

  1. Reply Russell L. Sayler says:

    I am very proud of my oldest daughter and what she has accomplished the past few years. Love to all.
    Dad aka Grandpa Sayler

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