Monday, June 6, 2011

Update

Yesterday we attended Aunt Breezy's High School Graduation!  Yay Breezy!  During the next couple of months she'll be preparing herself to leave for college in Arkansas...Go Hogs!  Lily will miss her so much! We are so excited and proud of her.  As I sat with my family yesterday at the graduation ceremony a question I had never bothered to think of came to mind and it took a great deal of strength to maintain emotional composure.  Will we ever be at Harper's high school graduation?


We have pushed for "intensive" therapy as prescribed by several geneticist and are working diligently to find a way to maintain better seizure control in an effort to help Harper succeeded.   As most of you know we are on a ketogentic diet trial and working on some fine tuning to see if diet can help.   So far the process is slow and unsuccessful but we remain hopeful.  
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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!