Friday, August 5, 2011

EXCITING NEWS!

Our records and those of other CDKL5 parents indicate certain foods trigger seizures and also when our CDKL5 kids are ill they do not have seizures.  These two phenomenons are puzzling and could be a clue in helping find a cure for this devastating disorder.   Therefore, we contacted Dr Francis Jensen, a world renowned Epileptologist in Boston, to discuss the possibility of  CDKL5 research.  Specifically pertaining to food and/or illness.  She replied and is VERY interested in heading the research projects for us.  We are scheduled to talk more next week on the process and how much this project will cost.  Hope4Harper currently has $3,142.83.  This plus whatever tonight's event will bring in will be used to fund this project. HOPE...LOVE...CURE!!! Let's FIND that CURE!!!
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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!