The Challenge of Giving Wings to Harper’s Wish

Posted Tuesday October 14, 2014 by thehowardhouse

How much time can we hope for Harper? With the passing of 3 CDKL5 children in the past three months, and after our own...

Run 4 Hope 2014: A Recap

Posted Wednesday September 10, 2014 by thehowardhouse

ANOTHER FANTASTIC YEAR FOR CDKL5 and EPILEPSY AWARENESS Total Registrants 190 Total Raised $14,014.04   See Run4Hope Race Results HERE: Thanks to Movin...

From Wishes to Hopes to What’s Next

Posted Thursday September 04, 2014 by thehowardhouse

“To wish was to hope, and to hope was to expect”  -Jane Austen, Sense and Sensibility In our CDKL5 Info support group a...

With GG: From First Memories to Last Moments

Posted Tuesday August 26, 2014 by thehowardhouse

“The life of the dead is placed in the memory of the living.” ~Marcus Tullius Cicero There are many first moments people experience...

No Seizures, But a New Challenge for Harper

Posted Tuesday August 12, 2014 by thehowardhouse

A complication we thought we would never have with Harper: WEIGHT GAIN! Since age three Harper had hovered between 20 to 25 pounds, even...

CBD Hemp Oil for CDKL5 Seizure Relief: An Update

Posted Monday July 21, 2014 by thehowardhouse

WE CANNOT IMAGINE LIFE WITHOUT THIS CBD PRODUCT! We lived with utter torture for nearly four years prior to finding CBD! HempMedsPx...

Communication Device for Harper: Tiring Fight, Final Battle

Posted Monday June 09, 2014 by thehowardhouse

I Refused. I refused to take away (for the second time) Harper’s means of communication!!! I refused to  return the eye-gaze device...

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