Who They Are
Hope4Harper is an organization designed to provide hope to those living with CDKL5 (Cyclin Dependent Kinase Like 5) disorder by fostering awareness and research projects in an effort to eliminate the various symptoms associated with the CDKL5 and other similar seizure related disorders.
What They Do
Hope4Harper was founded by her parents, who had this to say: “Harper’s Legacy is one that is stamped in history. Harper not only made history through CBD law but made medical history through organ donation. Despite her short life of only 5 years, we are beyond proud to be her parents.
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 United States 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. At that time, there were approximately 300 cases worldwide. Now there are close to 1500. Those affected suffer from intense seizures, sensory issues, gastrointestinal and cardiological difficulties, visual impairment, scoliosis, along with severely delayed developmental growth.
In September 2013, Harper became the first patient to use the Medical Marijuana ALTERNATIVE, Industrial Hemp Oil (RSHO from HempMeds) to treat her seizures. This product proved extremely successful for Harper, relieving her seizures immediately and Harper’s success on this product led to world change.
Sadly, even with our ability to finally treat Harper’s seizures, the severity of her particular case of CDKL5 was life threatening. In January 2016, at the age of 5, Harper lost her battle to this devastating disorder and left behind her parents and two siblings. Harper became another first! She was the first to donate her organs to scientific research for CDKL5. This donation has escalated the possibilities of research to find other viable treatment options and even a cure within the next 5 years.”