Thursday, March 17, 2011

Hope 4 Harper

Hope4Harper was created in honor of our daughter, Harper Elle Howard, who has a rare genetic disorder currently called CDKL5. This disorder is extremely rare with only an estimated 300 diagnosed cases worldwide and affects mostly girls, carrying with it symptoms similar to that of RETT Syndrome. With this organization we are hoping to accomplish a couple of positive goals:
 1) Help offset some of Harper's current and future medical expenses as her treatment requires intensive therapy which cannot be obtained locally or currently covered by insurance.
 2) Donate to CDKL5 research funds to assist in finding a cure for this disorder, and ultimately help offset the cost of other families medical expenses so their children can hopefully overcome this debilitating disease and lead a happy fulfilling life like Harper.

We thank you for your support and we hope you will continue to follow Harper's progress in the coming years.

For information on how to donate to Harper's cause, please email us at hope4harper@yahoo.com.


- Penny Howard/ Founder
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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!