The Rarely Heard by Hope4Harper

Hope4Harper is a nonprofit organization that began by documenting the life of Harper #LivingWithCDKL5.  In 2016 Harper passed away from #CDKL5 Deficiency Disorder and became the first CDKL5 #OrganDonor for scientific research.  The project we had been funding during Harper's life were now using Harper's donated organs to progress research for viable treatment options for the disorder.  In addition, the organization began documenting #LifeAfterCDKL5 along with the journey of other's  that are #RarelyHeard.