This year is difficult to recap because it has been difficult to live through.
The only thing you sometimes have control over is perspective. You don't have control over your situation. But you have a choice about how you view it. ~ Chris Pine
I thought living life as a special needs family was a nightmare. That was merely a challenge. Living through the loss of Harper IS THE NIGHTMARE! But I have so much love, support and understanding surrounding me that it makes the days easier to move through. The nights are still the worst. The time when everyone is asleep and I am surrounded by nothing but thoughts and memories. Those keep me awake in combative conversations with myself over reality.
The big issue is we are still living!! Therefore, WE MUST MOVE FORWARD! Broken hearted, discouraged, and doubtful, we keep going; seasoned, encouraged, and humbled.
We spent most of this year in limbo. The handicap accessible home we had configured for Harper remained mostly untouched for ten months. Then in November we began the process of reorganization, transitioning from the life we thought we would be living to the life we are living.
Throughout 2016 our family continued in many ways to advocate for Epilepsy Awareness, CDKL5 Disorder, Real Scientific Hemp Oil and organ donation.
Harper’s cells LIVE! They are alive, active, and reproducing! A once in a lifetime opportunity was successful! It took ten months for her tissue sample to grow into usable form for research purposes. Harper’s brain tissue took eleven months to process and distribute. As of December 2016, her brain is being used in the original research project we were established as a non-profit to fund five years ago! I am inspired by the fact that the very project that started to impact her life now literally uses her to potentially save the lives of many. As heartbroken as I am at her loss I am so proud of her accomplishments. #HarpersLegacy
The accomplishment I am most proud of is Harper’s impact on us. I believe that none of the others matter if we have not been changed.
Harper’s legacy lives, not in a petri dish but in each of us! Her contribution to science, however, was herself. Thanks to an amazing 2016 Memorial Run4Hope we were able to provide $10,471.69 to Dr. Alysson Muotri at the University of California, San Diego and $10,000 to Dr. Frances Jensen at the University of Pennsylvania.
To give you an idea of funding needs it costs $15,600 a year in the supply of food alone for only Harper’s living tissue.
We are in the process of planning 2017 Run4Hope! Details can be obtained by following Run4Hope on Facebook and on the Run4Hope page.
We are planning to see Harper’s brain in action in 2017 at the University of Pennsylvania! None of which is possible without your support!
CDKL5 Full Circle
Another Tragic Loss
Lily reunites with Harper
Lily and I speak out about Hemp
MEMORIAL RUN 4 HOPE
The Howard House meets The Fischer Family
2016 American Epilepsy Society Annual Meeting #AES2016 #StoptheSeizures