Family of 5-year-old who died of rare genetic condition donates organs for research

(Photo courtesy Facebook Hope4Harper CDKL5)

The family of a Texas girl who died in January after suffering from an extremely rare genetic disease has made the difficult decision of donating the 5-year-old’s organs to scientists, who they hope will find a cure.

"We had to put all the emotions aside and get her where she needed to be so she could continue to make a difference in this world, and, only after that day, could we sit and mourn the fact that she was no longer with us in her body," Penny Howard, mother to Harper Howard, told WFAA.com.

WFAA.com reported that, throughout her short life, Harper suffered from CDKL5, a condition that impacts fewer than 600 people worldwide. The condition caused her to regularly experience seizures— sometimes, up to 24 daily. The news station reported Harper is the first patient ever diagnosed with CDKL5 to donate his or her organs to research.

Howard told the station she is at peace knowing her daughter is out of pain.

"To me, her first three years of life were the worst possible time of my life— even over [OTHER?] than what we are going through now," Howard told WFAA.com. "For three years, I had to watch her essentially be electrocuted with no plug to pull."

Harper’s family has also started a nonprofit called Hope 4 Harper to further raise research funds to help scientists find a cure for CDKL5.