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
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Penny Howard
Harper Howard was born with a rare and fatal condition called CDKL5.
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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.
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At her worst, Harper Howard had up to 40 seizures per day. She was completely dependent on her parents for everything.
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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.
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Real Scientific Hemp Oil does not contain THC, the psychoactive ingredient that produces a high.
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WPTZ
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.
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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.
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WPTZ
Despite her death, Harper's brain lives on through medical research at Penn Medicine.
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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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NBC Olympics
Dr. Francis Jensen, chair of the neurology department, is leading the team of researchers at Penn Medicine.
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Samples of Harper's brain, pictured here, were donated to Penn Medicine by the Howard family.
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