September 18th, is Pitt Hopkins Awareness Day.Pitt Hopkins Syndrome (PTHS) is a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4. There are around 400 confirmed cases of this rare genetic disorder. My great niece Rylie, was diagnosed with this rare disease, early in life. She is the most perfect, happiest little 5 year old you could ever meet. She loves giving kisses, and I love getting them from her! She has come so far with her physical therapy. She is doing things her parents, my niece Heather and husband Jack, never thought she would do! Her little sister, Lily, who just turned 3, is her protector and will run to her side, when she has to get her teeth cleaned, and yell at the dentist, that Rylie doesnt like what he is doing. Please take a moment and read a little about PTHS, and some of the stories of the faces of Pitt Hopkins, they will melt your heart. Every June, we have a 5k run/walk and kids fun run to raise money for research. I hope you will consider joining us June 2015, or by making a donation to PittHopkins every little bit helps. Please watch the video that is attached. Heather and her two girls are the ones who are dancing. Make sure you have tissues handy. On this day especially, our families strive to spread the word about this rare disorder. Here in Pennsylvania Senator Lisa M. Boscola will once again be proclaiming this day for us in front if the state senate. Also, if you are headed toward Philly tomorrow be sure to check out our message in lights atop the comcast building. Please take a few minutes to view and share this video. It may help another family find the diagnosis theyve been searching for. If youd like to make a donation in honor of Rylie today, please visit pitthopkins Enjoy: m.youtube/watch?v=y_SrY2O9eKA&feature=youtu.be
Posted on: Thu, 18 Sep 2014 15:18:12 +0000
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