Friday, August 5, 2011
BIG DAY!!!
Directions:
121 to 75
take 75 North Exit #40A-Louisiana St
turn left at the street in front of the Golden Coral
go straight through the four way stop
turn right on Graves St and look for Community Life Church on your Left
LAST CHANCE:
Tickets will be on sale at the Event but for those of you unable to attend you can purchase your IPAD2 Raffle Tickets online until 3pm today! You do not have to be present to win. The winning number will be posted on our website on Saturday. GOOD LUCK!!!
THANK YOU!
Thank you to EVERYONE who helped to make this event happen for Harper! Your support has made a HUGE impact in her Life and the lives of others who fight this disorder everyday. Thank you!!
HARPER ELLE HOWARD - Her Story
Harper Elle Howard was born April 12, 2010 and at just three weeks old, began having seizures. Over the course of 10 months, Harper traveled across the US and underwent a multitude of tests. In February 2011 she was diagnosed with a rare and in some cases life threatening genetic disorder known as CDKL5. There are currently fewer than 300 cases worldwide. Those affected suffer from intense seizures, sensory issues, gastrointestinal difficulties, visual impairment, scoliosis, along with severely delayed developmental growth. For more information on this disorder please visit www.cdkl5.com. The severity of Harper’s particular case is unknown, but we remain hopeful. She has been prescribed intense therapy and seizure control to aid in successful mental and physical development.
Hope4Harper is an organization started to aid in her care. You may choose to help Harper directly with her expenses and although not a tax-deductible, ALL monies generated are used to provide Harper care that might not otherwise be available to her. Option two is a tax deductible option through The Children’s Hospital of Boston. Hope4Harper is working with Dr. Frances Jensen and her team at The Children’s Hospital of Boston on a seizure research project seeking out the best way to stop seizures in CDKL5 affected children. Please view the CHB Project page for more details.
Your support is greatly appreciated and we ask that you keep Harper in your daily prayers, continue to follow her progress and the progress of the seizure research project, as well as, share her story. With your help there WILL be a cure!
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