Hope in Our Hands: Cell Research on Harper’s Birthday (Pt. 2)
"Where there is no vision, there is no hope."-George Washington Carver
Harper began life with a seizure disorder
Harper Elle Howard was born April 12, 2010. It would have been her 6th birthday this year. Sadly, she passed away suddenly on January 8, 2016 from a rare genetic disorder known as CDKL5 Seizure Disorder.
The disorder carries with it a multitude of symptoms with the biggest one being seizures. The severe seizures impaired her ability to communicate. They negatively impacted her physical development, trapping her inside a broken body. In September, 2013 we discovered, researched and began treating Harper with RSHO (Real Scientific Hemp Oil).
It had an immediate impact on Harper’s quality of life. Seizures were significantly decreased and after six months we had no visible seizures. She had increased eye contact and verbalization of sounds, and decreased autistic tendencies associated with her disorder.
Harper finally began to live and become an interactive part of our family. 2015 was her fifth year and final year, and it was her best.
It was important for us to plan for and ultimately contribute Harper’s brain, tissue and blood to scientific research in an effort to give her life more meaning and purpose. Our HOPE is to impact those like her who suffer from seizure disorders so that their quality of life may be improved.
What we witnessed on April 12, 2016 was the effect of one of most basic laws of science.
The Law of the Conservation of Energy "Energy cannot be created or destroyed; it can only be changed from one form to another." -Albert Einstein.
We saw Harper in her new form!
We held the concept of HOPE in our hands!
We are just beginning to understand the significant impact being made on seizure disorders by the collaborated effort of organizations, people and families.
Upon arriving at the location of the Lab at the University of California, San Diego, a building that overlooks a beautiful beach, we met Dr Alysson Muotri, the doctor heading the research on CDKL5 and many other disorders with similar symptoms. He is the leading stem cell researcher at UCSD and was interviewed about this research during our visit.
We then sat with Mrs. Priscilla Negraes, Ph.D. as she showed us Harper’s living cells. She was the scientist who received Harper’s deep tissue samples after she passed away in January. Dr. Negraes initiated cell growth and preserved multiple samples for distribution around the world for research. She comes into the lab seven days a week to care for and collect data on Harper’s living tissue. Harper’s cells are being reprogrammed to reproduce brain tissue for the purpose of their study.
So finally we saw and we held our baby girl, who despite her new living form is NOT simply a number but labeled and referred to with the name Dustin provided her with six years ago, “H.H.” (Harper Howard)
It was a beautiful moment so full of joy! It was in fact everything I had imagined it would be and more.
I have always tried to be realistic and not attempt to see coincidences as “signs” that are not really there. But, on this day two very significant things appeared:
1) After spending the morning in Harper’s new home and meeting those who are currently in charge of caring for her we walked across the parking lot to the Torrey Pines Glider Park. There, in the midst of many various colored gliders, was one in purple and lime green with little orange wings flying gracefully through the sky.
2) As mentioned in part one of this visit to San Diego, Dustin and I always travel separately. Unfortunately for this trip, we had no financially logical choice but to travel home together. Of all the toys a little girl could have chosen to take with her and of all the flights in the airport she could have been on, she was on our flight home. Her companion was a bright lime green and purple stuffed hippo that said “Smile!” And, I am.
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Hope in Our Hands: Cell Research on Harper’s Birthday (Pt. 1)
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