Posted Friday December 30, 2016 by thehowardhouse

Hope4Harper 2016 Year in Review

Hope4Harper 2016 Year in Review

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.

Harper needs an RN Dec 2015


Throughout 2016 our family continued in many ways to advocate for Epilepsy Awareness, CDKL5 Disorder, Real Scientific Hemp Oil and organ donation.


Same: our life-changing loss and Harper’s greatest accomplishments

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.

  • Her life and death have led Lily; a once shy, soft-spoken little girl, to discover her compassionate heart for others and courage for public speaking.
  • Seth may never remember life with her but he certainly knows who she is by her voice and her picture. As he becomes older and grasps the true understanding of Harper’s story in our lives he too will be empowered by her existence.
  • Dustin and I have grown stronger as parents, as a couple,  and as individuals because of Harper in our lives.

Seth and Harper

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.


Hope4Harper will keep moving forward in 2017

To celebrate Harper’s 1st Heavenly Birthday we will be taking a Howard House Holiday.  You can follow along from January 5th through January 15th using Hope4Harper’s social media sites.


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!


Month-by-Month Blog Recap of Hope4Harper’s 2016


Harper Howard Celebration of Life – Never Give Up Hope


Speaking for Hope and Hemp at Southwest Cannabis Conference DFW


It’s Harper’s Birthday, This Year She Gave the Gift


Hope in Our Hands: Maintaining Harper’s Living Cells


Hope in Our Hands: Cell Research on Harper’s Birthday (Pt. 2)


Lily’s Adjustment to CDKL5 Loss


How We Stay Healthy Parents After Tragedy


CDKL5 Full Circle

3rd Annual CDKL5 Conference – June 2016, Chicago, IL


Another Tragic Loss


Broken Hearted: Our “Run Team” Volunteer Coordinator Dies in Tragic Accident


Lily reunites with Harper

Dear Hope4Harper Supporters

Lily and I speak out about Hemp

Medical Marijuana Expo Held at San Diego Convention Center




Dallas Morning News: Months After Daughter’s Death, Parents of 5-year-old Harper are still battling rare genetic disorder


Memorial Run4Hope Race Results and #NTXGivingDay Reminder


The Howard House meets The Fischer Family

Dallas Morning News: After years of waiting, families of children diagnosed with rare genetic disorder finally meet



2016 American Epilepsy Society Annual Meeting #AES2016 #StoptheSeizures

Meeting with Dr. Frances Jensen at AES 2016 Hope4Harper at AES 2016




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