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081 – Be Yourself – LIVE at Amicus Therapeutics
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The teenage years are some of the toughest years most of us live through. Aside from the typical peer pressures and desires to fit in, imagine facing middle and high school with a rare disease. That’s exactly what these three girls have done or are doing right now.
Meet Caterina, Maya & Annie as we talk about life with a rare disease. From pay phones and boy bands, to navigating school schedules and surgeries, these three girls talked with Kyle & Sean in front of the committed and supportive staff at Amicus Therapeutics. Their authenticity and outlooks on life are inspiring and enriching to anyone who hears them share.
In this episode you’ll be encouraged by their unifying message: Be Yourself!
We are grateful to Amicus Therapeutics for allowing us to be a part of their global-staff conference, held at the Make-A-Wish Wishing Place in Monroe, NJ.
Additionally, we are thankful for and forever touched by the willingness of Caterina, Maya, & Annie to join us on stage for this forum.
Some of us unfortunately can not “be yourself” …. I as a parent, a woman, a Momma, an advocate, an Entrepreneur in a world I did not choose
My Teenage daughter can not be herself …. she has to hide her RARE DISEASE, all of her Medical problems, she can not be the Amazing Athlete and RARE Disease person at the same time b/c she is scare to death that she will be turned away from the college and or college Coach that has made her an Offer to her Team, b/c they will call her a “Liability” as she has been called by her school. I’ve notice the more money and “fame” The Rare Disease Community seems to be receiving the less “real” stories of hard true facts comes to light. Or maybe our family is the only one in America that can not show our true selves … our true feelings if we want to get help from someone, and our daughter go to college as an athlete as long as her Disease allows her to live. Her diseases have put a limitation on her, a life limitation, her Daddy and I will not!!