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 people saw how honored were to have been able to continue to aid in research for CDKL5 and Seizure Disorders.
Our decision to donate Harper to the cause was an easy one. We saw no better way to move research forward. At the conference we were excited to find out that there is much that can be done by families right now through the donation of blood, skin biopsy, dental pulp, saliva, etc. We are also pleased to let you know that our entire family will be bio banking as relatives to Harper to help scientists in making further discoveries on the genetics of this disorder and more.
Missing Harper and our CDKL5 life
The experience of these conferences left our hearts aching for what time can never bring back. It was comforting for each of us to connect with other families similar to our own. We very much look forward to another great conference in 2018. Our ultimate advice after an event like this is, as always:
NEVER GIVE UP HOPE
and
CHERISH EVERY EXHAUSTING MOMENT
Lily’s CDKL5 Conference experience, in her words
Everybody has a different body so of course we are all different. Does Harper’s disorder make her different? Yes but only because of her medical needs. Overall she is the same as me; just like all the friends I made this weekend are the same as me. Hannah smiled when she saw me and wanted to show me the music outside. I like music! Keira sat to play bubbles and danced with me. Merium let me hold and love on her while we watched her Mickey Mouse Toy and that reminded me of being a big sister to Seth. Samantha wanted to talk to me and swim at the pool. Katherine wanted to tell me good morning. Jade showed me that we have the same twinkle toe shoes in a different design. I see no differences between any of us. We all want to enjoy life being a kid!
Penny and Lily speak about Harper and bio-banking
Lily on the Sibling Panel at 2016 CDKL5 conference
