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...
by hope4harper | Mar 10, 2016 | Harper's Updates
Lost and healed I woke up to find that another CDKL5 child has been lost… or another way to view it is another CDKL5 child healed. It’s a choice on which way you view it. One, while still sad, speaks words of hope and positiveness that will help you move...
by hope4harper | Mar 1, 2016 | Harper's Hemp, Harper's Updates, Seizure Research Project
“Hemp helped my sister be my sister” The Southwest Cannabis Conference and Expo (SWCCExpo) is a professional and educational medical cannabis and hemp conference where industry members, entrepreneurs, local leaders, companies, advocates, and curious...
by hope4harper | Jan 30, 2016 | Harper's Updates
Harper Howard Celebration of Life – Never Give Up Hope Harper’s life, her way Today many people came to CELEBRATE Harper! And so many more were unable to attend in person but have been thinking about her so much lately. Loving messages have been...
by hope4harper | Jan 29, 2016 | Harper's Updates, Upcoming Events
Unpacking a New Normal Accept being served during times of need During the past two weeks we have had many family and friends step in and assist us with moving, unpacking, keeping the kids, providing meals, birthday party planning for Lily so she doesn’t get...
