by thehowardhouse | Jul 25, 2016 | Harper's Updates
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...
by thehowardhouse | Jun 30, 2016 | Harper's Updates
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...
by thehowardhouse | May 19, 2016 | Harper's Updates
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...
by hope4harper | Apr 7, 2016 | Harper's Updates, Seizure Research Project
“If you lose something, it’s OK. And I get to see Harper again, but not for a long time… Just like in the book. Right?” -Lily Howard The reality of a life-threatening disorder It’s important to know the task of death requires great strength and that you...
by hope4harper | Mar 31, 2016 | Harper's Updates, Seizure Research Project
In my previous post I mentioned that the parts of Harper not donated to science were cremated. Body donation is delicate but it is not a scene out of Frankenstein. Science takes the pieces they need and can appropriately preserve for valuable research. The remains...