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The Hadley Family

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Bryan

Peyton and Kayla's dad, Bryan, is dedicated to fighting for his kids' lives by pursuing new treatments for this rare disease.

Laura

Mom to Peyton and Kayla, Laura is co-founder, along with her husband, of the Hadley Hope non-profit.

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Peyton

Peyton is the oldest of the three Hadley children. Peyton began to show symptoms of NPC when he was eight, and a year and a half later he was officially diagnosed with Niemann-Pick Type C.

Kayla

Kayla received her official NPC diagnosis at the same time as her big brother Peyton. Despite having an enlarged spleen as an infant, Kayla has since been completely asymptomatic with the help of cyclodextrin.

Jonah

Youngest sibling Jonah does not have NPC nor carries the mutation, but supports his big brother and sister in their fight.

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Family Life

"It's extremely difficult to keep life 'normal' for the family. Any family with a rare disease knows this."

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Niemann-Pick Type C

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Symptoms

For many years, Bryan and Laura didn't know their kids had NPC, and doctors didn't test for it. One telltale symptom - an enlarged spleen - could have told them otherwise.

Juvenile Onset

A lot changed for Peyton when his symptoms manifested at eight years old. In many ways, however, he's the same kid.

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Cyclodextrin

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Using Cyclodextrin

"We had to drive six hours south to Oakland every two weeks...but we felt so strongly that the cyclodextrin was working and helping that this is something we really needed to do for our kids."

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Early Intervention

Family

Since the damage NPC does to neural pathways is irreversible, the Hadleys pursued early intervention with their children.

Dr. Diane Williams

Giving Kayla cyclodextrin early stabilized her NPC and kept her asymptomatic years after her diagnosis.

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Results

Family

After Peyton began cyclodextrin treatment, both his speech and gait improved noticeably.

Dr. Caroline Hastings

After treatment, Peyton told his family and doctor that he could think more clearly and focus better.

Dr. Diane Williams

In both Peyton and Kayla, cyclodextrin treatment brought the disease's progress to a standstill.

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Intravenous (IV) Cyclodextrin at Home

"We spent about a thousand hours in the hospital until we finally said, 'Why can't we do this at home?'"

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Pursuing Cyclodextrin

"Ultimately, the decision to start cyclodextrin started because we just couldn't wait any longer."

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Cannabis Oil

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Cannabis Oil

"Peyton is prone to seizures...[cannabis oil] controls the intensity of the seizures and the regularity of them."