Tag Archives: disability

A View Into Rett Syndrome on The View


If you’re like me, you have never heard of The View, a daytime talk show with a bunch of women talking about politics and current events. Last week The View turned their attention to Rett syndrome, featuring a segment with a young family whose … Continue reading

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Eight Years on the Planet


Late last month, Caroline (pictured) turned eight. Eight years on the planet. For Caroline’s birthday, Tony had a little cake party at Hershey park. My daughter will turn thirteen in January and already we have begun the planning for how she will spend the day. … Continue reading

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Angels Among Us


Caroline’s Cause put this video together to give Caroline a way to thank all the wonderful people out there that have given her the love and care that she desperately needs until the cure is found. Without EVERYONE contributing Caroline would not be where she is today. As the saying goes..”it takes a village to raise a child” God sent Caroline a village of angels!

Thank you all for caring.

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Dr Warren, My Hero!


I can t write a blog about Caroline and Rett Syndrome without mentioning Dr.  Stewart Warren, Pediatric Pulmonology at Hershey Medical Center. Dr. Warren and I first met in 2004 when Caroline was experiencing some respiratory problems and our family … Continue reading

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Caroline’s Prayer


Please tell my parents they have nothing to fear. Please tell them that I was sent from above, just so they could give me all of their love. Continue reading

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Speak, Child. Be Heard.


Hi, my name is Caroline and I am 7 years old and have Rett Syndrome. Some days Rett Syndrome has me down, but I am determined to not let those days outweigh the good days. My family and nurses help … Continue reading

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A Note From Big Sister


  (Click for larger image.)

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With a Little Help from My Friends


Last week was nutso. Gateway dropped Caroline’s Primary Care Physician (PCP), which disrupted her Medicaid insurance. What does this mean? Well, in the insurance world—particularly in the Medicaid world—you must have a PCP to get anything done. The PCP is the doctor who writes referrals … Continue reading

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It’s Official: To Wit, Whereas, Resolved!


And now from the General Assembly of the great state of Pennsylvania comes Senate Resolution No. 181 (reposted here in its entirety):      1  Designating October 2007 as “Rett Syndrome Awareness Month” in      2     Pennsylvania.       3     WHEREAS, Rett syndrome … Continue reading

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Make-A-Wish: If Wishes Were Kisses, Our Face Would be Wet


I think we’ve all heard of Make-A-Wish Foundation, the national nonprofit that helps out terminally ill children by granting them a wish. I’ve mostly heard about it in references to popular culture, where it’s apparently hugely popular to parody. If you look at its Wikipedia … Continue reading

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