The story of my daughter Harper is that everybody’s life, even if they have special needs, has a purpose.
Harper Elle Howard was born on April 12, 2010, with a very rare, non-hereditary, life threatening genetic disorder called CDKL5 epilepsy — at just two weeks old, she started experiencing severe, uncontrollable seizures
At worst Harper was having 40 plus seizures a day. They took everything from her including her ability to eat.
Looking back, I should have known then that Harper’s life had a greater purpose … but things like that are often impossible to see when you’re living them in the moment.
In 2013, after watching Dr. Sanjay Gupta’s CNN special “Weed” and endless hours of research online, we found an alternative from HempMeds called RSHO.
I’ll never forget seeing the immediate impact it had on her quality of life. Harper came alive; we got to know her personality. After three years of living in hell there was finally light! Harper does not simply exist here on Earth but rather she lives!
But, believe it or not, Harper’s miracle actually lie half a world away…
Without knowing just how far it might reach, I launched Hope4Harper.com where I set out to document Harper’s struggle with CDKL5 Epilepsy and how RSHO stopped her seizures and helped give some of her life back.
How could I ever know that others would find Harper’s blog from thousands of miles away in a desperate search for their own answers?
After two and a half years, RSHO is now legal in 5 Latin American countries. My Harper, unknowingly to us, changed the world and it will be a part of Harper’s legacy as a 5-year-old whose tragic fight changed the world forever.
Sadly, Friday, January 8, our family tragically lost our little angel Harper Howard.
For five years we walked this fine line of hope and hopelessness while Harper fought each day simply to survive so she could do her job here on Earth and change the world.
Harper is the first-ever CDKL5 brain “banked” as a donation to scientific research to find a cure for CDKL5 epilepsy, making her another first in a line of many for this little girl.
In the end, I am honored that she choose me to be her partner in accomplishing more in five years than most people do in a lifetime without ever having to utter a single word herself. My non-verbal, immobile child rode horses, bikes, swam, bowled, roller-skated and ice-skated and loved to swing. Harper was 2015 National America Miss Texas Cover Girl Princess. Her favorite colors were purple and orange, favorite number 15 and favorite singer Elvis Presley.
We knew all this and more about Harper thanks to RSHO.
For anyone who would like to learn more about the Howard family, research being funded at the University of Pennsylvania and San Diego or our annual Run4Hope fundraiser in September please visit www.hope4harper.com.
