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Hooray for Josephine “The Bean” Senek, Our 2017 Rare Disease Day Warrior!

February 28, 2017
Posted by Alexis Washington

Today, on Rare Disease Day, we honor Josephine Betty Joy Senek, born with Tetrasomy 8p Mosaicism — a rare disorder that has a worldwide count of 26 diagnosed cases.

Our little “J-Bean” has a come a long way in just 8 and 1/2 years. She is not only the daughter of our Executive Vice President, Sheldon Senek, but an inspirational little person to all. Ever since her first steps back in 2011, she has moved us with her determination and big heart. Her rare disease appears in some of her cells, causing various physiological and learning issues.

Her big steps:


 

Jose14610934_1795548664049817_2971519198261939444_nphine faced some obstacles this year, especially when she underwent spinal cord surgery. But as always, she came out with the same beautiful smile and amazing spirit. A spirit that helped her family navigate through some of their darkest days. Her mother, Krysta Senek (Sheldon’s wife) posted this touching message to Josephine for Rare Disease day:

“I have cried because of the fear of the unknown (and known). I have cried because of the uncertainty of your future achievements. I have cried because I am nervous about what new symptom will pop up randomly (and they do) …But most of all, I laugh. I laugh more than I cry. I am proud. I see the pathway you are forging for others and know you are here to guide, to inspire, to teach, to love unconditionally.”

Her ability to inspire others was evident this past January during her fundraiser for a service dog. She was approved to receive the dog through Merlin’s Kids in Midland Park, NJ, but her family still needed to raise $15,000 dollars. With the support of her friends and family, they surpassed their goal in a matter of an unbelievable 8 days!!! 

Josephine and her family will receive her new service dog (to be named by Josephine) in 6-8 months. This service dog will help give her comfort and security in public places and crowds, transition from one place to another, help her stay calm, help her sleep at night, and even make new friends!


 

We at Eagles Talent are trying to do our part, we hope you will do yours and help spread awareness!

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To learn more about the global initiatives supported through rare disease day, please visit rarediseaseday.org.

If you liked this story, you will also like this article: What does Rare Disease Day Mean to You? It Means “Josephine” to Us!

Alexis Washington
Posted by Alexis Washington
Alexis Washington is the Director of Marketing of Eagles Talent Speakers Bureau. She writes about expert keynote speakers and Motivational Speakers, as well as tips and tricks for corporate meeting planners. If you need a guest professional speaker or corporate entertainer for your next convention or conference, you can visit EaglesTalent.com. Connect with me on Google Plus
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