Harper Howard’s Journey Through CDKL5

Harper Howard's journey through life with a rare form of childhood epilepsy, and how she aided in research on early childhood orphan diseases even after her death.

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Penny Howard
Penny Howard
Harper Howard was born with a rare and fatal condition called CDKL5.
CDKL5 is a form of early onset epilepsy that renders the patient incapacitated with violent seizures and developmental disorders. Researchers do not know what causes CDKL5 or how to treat it.
At her worst, Harper Howard had up to 40 seizures per day. She was completely dependent on her parents for everything.
When Harper was about 3 years old, her parents discovered Real Scientific Hemp Oil. Administering it to their daughter initially reduced the seizures and then eventually eliminated them, her parents said.
Real Scientific Hemp Oil does not contain THC, the psychoactive ingredient that produces a high.
Harper's parents credit the medication with giving them their daughter back. She was able to make eye contact and use small sounds to communicate, they said.
But Harper's disease was fatal. She died shy of her 6th birthday. Her mom, pictured center, co-created Hope 4 Harper to fund medical research and raise awareness.
Despite her death, Harper's brain lives on through medical research at Penn Medicine.
Alicia Lozano
Doctors there are hoping to understand what causes CDKL5 and how cannabis-treatments could help patients suffering from the condition.
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Dr. Francis Jensen, chair of the neurology department, is leading the team of researchers at Penn Medicine.
Samples of Harper's brain, pictured here, were donated to Penn Medicine by the Howard family.
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