Blog
Blog
Our journey with Harper was full of adventure, difficult decisions, and exciting possibilities. Please use the search bar to type in a word of the experience you are searching for such as, CBD, Organ Donation, Eye Gaze, GTube, etc…. If you are unable to find information please feel free to contact us directly and we will help you in any way we can.
The Struggle With Space and the Toybox of My Dreams
The Struggle With Space and the Toybox of My Dreams It’s been just over six months since our move to a new home with the space our family needed. When we expanded our square footage we thought space would no longer be an issue. Why then, is it still an issue!? Not that we don’t […]
Broken Hearted: Our “Run Team” Volunteer Coordinator Dies in Tragic Accident
“Beyond the door, there’s peace, I’m sure. And I know there’ll be no more tears in Heaven.” -Eric Clapton Broken Hearted: Our “Run Team” Volunteer Coordinator Dies in Tragic Accident It is with a very heavy heart that I announce the unexpected and tragic loss of our valuable, caring, loving, supportive, crazy and funny Run4Hope […]
3rd Annual CDKL5 Conference – June 2016, Chicago, IL
We saw no better way to move CDKL5 research forward Hope4Harper spent the last two weeks openly sharing our experiences with media at the World Cannabis Conference in New York City and with families at the CDKL5 Scientific and Family Conference . My hope was that people saw how honored were to have been able to continue […]
Summers with CDKL5
Summers with CDKL5 As we dive into summer I want to share with everyone a few things we learned over the past 6 years in our world of special needs…. “Ah, summer, what power you have to make us suffer and like it.” ~Russell Baker REMEMBER SUNSCREEN! Some medications and combinations of medications cause extreme sun […]
How We Stay Healthy Parents After Tragedy
How We Stay Healthy Parents After Tragedy DISCLAIMER: I am a firm believer in medical science. I am not against the use of pharmaceuticals. doctors or medicine. Advancement in Science saves lives daily as does the addition of supplements to one’s diet. There is a balance between Nature and Science and much of science […]
Lily’s Adjustment to CDKL5 Loss
Lily’s Adjustment to CDKL5 Loss Lily has been adjusting to Harper’s absence surprisingly well. Lily made a video for the research Lab taking care of Harper’s living, growing cells! Won’t you consider contributing through Memorial Run participation? (virtual runner option for those unable to attend) Posted by Love Day on Tuesday, April 26, 2016 […]
Hope in Our Hands: Maintaining Harper’s Living Cells
Hope in Our Hands: Maintaining Harper’s Living Cells This is the final post in a series about our visit on Harper’s birthday to a stem cell research laboratory at the University of California at San Diego. The trip was not only to see the reality of Harper in her new form. We chose what would have […]
Hope in Our Hands: Cell Research on Harper’s Birthday (Pt. 2)
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, […]
Hope in Our Hands: Cell Research on Harper’s Birthday (Pt. 1)
Hope in Our Hands: Cell Research on Harper’s Birthday (Pt. 1) “The emotion that can break your heart is sometimes the very one that heals it…” -Nicholas Sparks Our 3-day, 2-night visit to Harper’s new “home” at a cell research lab in San Diego was filled with so much joy, I hardly know where to begin the […]
It’s Harper’s Birthday, This Year She Gave the Gift
In honor of Harper’s Birthday (4/12/16), we invite you to register for Hope4Harper’s memorial Run4Hope at the one-day (April 12th only) one-time price of $12! This registration special ends at midnight. No coupon code is needed. Harper’s 1st Birthday, 2011 Life was such a blur. The life we had prepared for with the birth of Harper […]