Thursday, April 14, 2011

On The Road Again!

Well we're off yet again for another adventurous weekend in Austin!  Harper will only be getting 3 sessions this weekend rather than 5 because we are going to be staying an hour away with family in San Antonio.  Thank you Uncle Jim and Aunt Marlene!!  We are also bringing Lily this weekend.  Between sessions we are going to take her to see the State Capitol!  Harper has been doing great this week and really moving those legs of hers!

Thank you all for the wonderful birthday wishes!  A special thanks to those who contributed to her continued treatments and hopeful future cure through the Hope4Harper Foundation.  Your continued prayers are needed and deeply felt by our family.
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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!