Looking back at the beginning of Hope4Harper
Dear Hope4Harper Supporters,
From the beginning of this journey to gain control over our daughter’s devastating seizures, you have graciously given your time and money. When, in the summer of 2011, we were a new nonprofit in desperate need of raising $100,000 for seizure research in just four months, you gave willingly. Not knowing what would come of your money, you chose deliberately to have faith in our hope. To those who contributed one time and those who gave multiple times, we appreciate you more than you know.
For you truly are the reason we are where we are today. And I do not think many really grasp where that actually is.
To refresh the memory of some, Harper was an innocent little girl who lived with CDKL5, a rare life-threatening disorder that made every day a struggle for her. Those same days were a living hell for us as her family who had to watch, often helplessly, her struggles. We searched for three years for a way to provide Harper with a better quality of life no matter how long that life would be.
Grasping where we are today
Beyond the extraordinary find of RSHO that helped her so much, (and allowed us to begin to know everything we could about her before she died, such as her favorite number, color, book, movie, song, singer, etc.) Harper has inspired the parents of others like her to challenge the CBD laws in their countries. Families fought to provide their children that same “better quality of life” we as a special needs family were searching for.
In addition, Harper has made medical history! Today I could walk away and leave the special needs world behind me never to look back, knowing many Neuroscientists, Epileptologists, and Neurologists from this point forward will know CDKL5 and the contribution HARPER HOWARD made to research!
She is the first ever CDKL5 patient to donate organs to scientific research.
Harper has made medical history
Her living cells are at the University of California, San Diego. Together with her brain, which is in Boston, Harper is impacting treatment for Autism, Parkinson’s, Alzheimer’s, and a multitude of rare disorders including her own, CDKL5.
From deep tissue samples taken postmortem (after death), Dr. Moutri’s laboratory has reproduced a cell line of Harper for distribution to research around the world. It is my understanding that, thanks to the 2012 Nobel Prize winner Dr Shinya Yamanaka, the lab was able to take Harper’s cells and transform them into living brain cells. This process takes ten months.
They are able to study how these cells group together and begin to communicate. This helps to determine the point at which seizure activity begins to occur. Scientists today are tracing where the seizures begin and how they travel throughout Harper’s “living brain” they created in a petri dish (pictured above). They will then be able to test treatment for CDKL5 on Harper’s “living brain” that will impact other disorders that have seizures as a symptom.
The most amazing thing about Harper’s contribution is that they can validate their findings on Harper’s actual brain tissue located at the Harvard Brain Bank. They can also compare seizure activity of Harper’s “living brain” they created to the multiple EEG data we obtained over her lifetime, both before the use of CBD and after.
Therefore, YOU made medical history
So the small, newly-developed, non-profit organization, that you donated a little bit of money and/or time to, in honor of one little girl, maybe not really thinking much would be accomplished other than helping the family feel better….YOU MADE MEDICAL HISTORY!
No, your contribution did not save Harper’s life. But please know that without your donation we would not have funded research with the 2012 President of the American Epilepsy Society. We would never have been able to attend the AES Conference that year and every year after to meet other research scientists, including the board president of the International Foundation for CDKL5 Research. That introduction ultimately led to Harper being able to be donated to science upon her passing. And that contribution made medical history.
Your investment in HOPE had a HUGE return!
From the few hundred of us living through CDKL5 Disorder to the millions of us living through Epilepsy, and special needs in general….THANK YOU!
The best day of Lily’s life
It wasn’t until we took Lily, Harper’s older sister, to see the living cells exactly eight months after she last saw her sister alive that we began to understand the magnitude of your contribution to our growing organization. Lily has claimed August 8th as “The BEST Day of her Life!” and has not stopped listening to the song since.
I am living every parent’s worst nightmare and every parent’s dream at the same time! I am learning to lead my children to find their own purpose in life and have the courage to fulfill it. I would not have had the strength to do this without your support.
Sincerely, Penny Howard and the Howard Family
P.S. See you at Run4Hope on September 17th. Register online or at the event.
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Help MAKE HOPE REAL by being on a subcommittee for our Run4Hope 5K and Kids Fun Run event to raise money for seizure research and Epilepsy awareness.