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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.
Harper went to Heaven – January 8, 2016
“There is so much that I don’t understand. But I know you’re dancing with the angels.” –Monk & Neagle Harper Elle Howard April 12, 2010 – January 8, 2016 I never imagined Harper’s job on earth could be done… We got Harper to the doctor for our yearly “common cold-turned-pneumonia” thinking we would be at the […]
Month-by-Month: Hope4Harper CDKL5 2015 Year in Review
Hope4Harper reviews 2015 month-by-month January and February were pretty uneventful as Harper and I happily recovered out of the hospital and at home from our Christmas 2014 car wreck and flu. We were well enough by the end of the month to go ice skating and celebrate big sister Lily turning seven. I do […]
CDKL5 Hope: Experiencing a Virtual Seizure and more from AES 2015
Speak until somebody listens. And don’t stop there! The annual meeting of the American Epilepsy Society was a success! AES 2015 was a time of reconnecting face-to-face with several individuals, organizations and doctors we now call friends. Professional and personal conversations revived the “HOPE” we all carry with us each day! My personal highlights from […]
AES Annual Meeting 2015: How do parents in special needs families prepare to travel?
“It is always sad when someone leaves home, unless they are simply going around the corner and will return in a few minutes with ice-cream sandwiches.” ― Lemony Snicket Preparation to leave our CDKL5 family is intense! It’s off to Pennsylvania for the 69th Annual American Epilepsy Society conference. AES provides information in “research and clinical care for people […]
2015 Run4Hope: race results, photos, and how it might not have happened
Our Run Team has been tested! Run4Hope is Hope4Harper’s BIGGEST fundraising event of the year for seizure research and epilepsy awareness. It takes planning, preparation, prayer…it takes a TEAM! And Run4Hope has an amazing team of volunteers that graciously give of themselves each year for our family. For me, the time spent with my team is […]
More than CDKL5 Awareness Sponsors: Stories of Run4Hope Relationships
As we begin our final preparations (7 days left!) for Hope4Harper’s 4th Run4Hope 5K and Family Fun Run, I look over our list of event sponsors. There are businesses and organizations that have been with Run4Hope from the beginning. And each year they enthusiastically return, ready to offer their support for seizure research and Epilepsy […]
Harper’s Surgery Update and Remembering How to Enjoy Your Sheep
When nothing seems to be working in your favor what do you do? Harper had a Vesicostomy surgery 18 days ago and is recovering nicely. We had a bit of a problem with yeast around the surgery site but once we determined what cream we needed to use it healed almost immediately. This happened just […]
VESICOSTOMY: Our CDKL5 Child’s Surgery
One more “normal” that is taken away from Harper My head hung, my heart sank, and I fought back the water that began to fill my eyes. It’s just one more thing Harper has to deal with; one more surgery that is risky in and of itself. Increased risk when you have a child with […]
CDKL5 disorder goes national at National American Miss
An open call invitation A while back, a letter came in the mail from National American Miss Pageant inviting my girls to Open Call. It NEVER crossed my mind this experience would be for Lily only. Harper may be different in her physical abilities but that does not mean she cannot do something she sets […]
Harper debuts at National America Miss on July 31
Harper introduces herself July 31st “My name is Harper Howard. I am 5 years old, from Carrollton Texas. I like riding horses, swimming, playing with my big sister Lily, and annoying my baby brother Seth. I let others know about living with Epilepsy with Hope4Harper. When I grow up I want to do whatever makes […]