5-year-old with rare condition donates organs to others

WFFA | Sebastian Robertson

Harper Howard (in photo), 5, died after a lifelong fight against a rare genetic disease in January of this year. Her parents made the tough decision to donate her organs to science.(Photo: WFAA)

THE COLONY – Harper Howard, 5, died after a lifelong fight against a rare genetic disease in January of this year.

Her parents made the tough decision to donate her organs to science.

Harper is the first patient ever diagnosed with CDKL5 to donate organs. CDKL5 is a rare genetic condition that affects less than 600 people around the world.

"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," said Harper's mother, Penny Howard.

Over the course of her short life, her physical and mental development was delayed and she regularly suffered from intense seizures — as many as 24 a day. Continue reading

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