Tuesday, October 18, 2011
Thank you Paul and Alpha Energy Labs for letting me represent your organization at the AARST 2011 Symposium! If you didn't still trust me enough to be a good Alpha Rep we would not have been coming here in the first place.
BIG THANK YOU TO Aunt Jonnie for flying down to Texas for two weeks to help my mom (MOE MOE) take care of Sassy Pants Lily and Fussy Bootie Harper! Without either of you we would not have been able to go!
Jamie Woods and Linda Jacobson without you who would know her? Thank you!
Hilton in the Walt Disney World Resort
PSAV Presentation Services
Flyin Fur Photography
We are fans of you all!! Thank you for assisting us this past weekend and for your continued support of Harper and her Cause. With your help and that of many others Harper's project goals WILL be met and her seizures WILL stop!
I am sure I forgot someone and I apologize but I do appreciate you helping to make this happen and support Harper more than you will know!
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!