Living With CDKL5
Harper Elle Howard was born April 12, 2010 and at just two 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 approximately 300 cases worldwide.
Those affected suffer from intense seizures, sensory issues, gastrointestinal and cardiological difficulties, visual impairment, scoliosis, along with severely delayed developmental growth. 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 not for profit organization created in honor of Harper exclusively for serving charitable, educational, awareness and scientific purposes related to providing hope to those living with CDKL5 disorder and other diseases that may be viewed as similar, in an effort to help control and eliminate the various symptoms associated with the disease, such as, but not limited to, seizure control, gastrointestinal and bone health, along with mitochondrial, metabolic and cardiological issues, etc…. We are currently working with, Renowned Epileptologist, Dr. Frances Jensen and her team at The University of Pennsylvania in an effort to stop seizure in CDKL5 affected children.
The goal is to make a difference in the lives of children who are needing a voice and the help of others to find a cure. We need your help in being that voice for Harper and others with CDKL5! Your support is greatly appreciated and we ask that you keep Harper and her friends in your daily prayers, continue to follow her progress and the progress of the CDKL5 Seizure Research Project, as well as, share her story.
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