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.”
How You Can Donate
There are essentially 3 ways to donate. All of them are tax deductible. You may either donate to the specific project that is utilizing Harper’s donated organs at the individual University or directly to Hope4Harper, a 501c3 nonprofit organization. Our $1,000 donation will contribute to the research project working on the cure. The goal is treatment in 5 years and a cure in 10. With Harper’s organ donation science believes this goal is attainable. Look out year 2028! Your donation can help reach this goal. Please click HERE to donate through the Hope4Harper website.
How You Can Help
The biggest way you can help Hope4Harper is by simply sharing her story. Visit her website, facebook, twitter, Instagram, youtube channel and share Harper’s Legacy with others.
FAST FACTS, Hope4Harper
1. CDKL5 is a rare X‐linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro‐developmental impairment.
2. Most of the children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined to a wheelchair , dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties
3. At this time there is not a known cure for seizures associated with CDKL5 disorder. However, in rare occurrences some families have been able to obtain “honeymoon” periods of seizure control.