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...
by hope4harper | Mar 27, 2016 | Harper's Updates, Seizure Research Project
It’s a strange feeling to have relief and pain at the same time I am so happy that Harper is no longer suffering! She lived 2097 days. That is 299 weeks trapped inside a broken body that hurt. Grief is not a process it’s a new way of life Do not be fooled by our...
by hope4harper | Mar 23, 2016 | Harper's Updates, Upcoming Events
How would you market HOPE? Hope4Harper began exactly five years ago because of a specific diagnosis of Harper’s rare genetic disorder. Hope4Harper has evolved into an organization of spreading HOPE and help in funding research that is centered around providing a...
by hope4harper | Mar 13, 2016 | Harper's Updates, Seizure Research Project
Your responses I asked if you thought Harper’s story should continue or end. Read the post “Continuing… or Ending… Harper’s Story here: (Part 1) and (Part 2). We will Continue! After contemplation, feedback, and family discussion which...
by hope4harper | Mar 12, 2016 | Harper's Updates
Choices: if we had one, would we have Harper’s life be the same? There is no right or wrong answer to the question Dustin posed to me last night. “If you could go back six years and have Harper be ‘normal’ and have no clue of this special needs...
