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The Leoni Family

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Anthony

Anthony, Jessica's dad, has been fighting for his daughter's life for over a decade.

Lisa

Mom to Jessica, Lisa fights alongside her husband by pursuing cyclodextrin treatment.

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Jessica

The Leonis' daughter, Jessica, was diagnosed with NPC before her first birthday and has been homebound since 2005 due to seizures and pulmonary complications. In July 2015, she received her first infusion of cyclodextrin.

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Family Life

"She's a fighter. She's determined to keep fighting."

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Niemann-Pick Type C

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Symptoms

As a baby, Jessica had jaundice, an enlarged liver and cirrhosis. As she grew up, she began to fall behind developmentally.

NPC Diagnosis

The diagnosis was devastating for Anthony and Lisa, but it did not change their love for Jessica.

Seizures

At the age of seven, Jessica started having over one hundred seizures a day, and within the year she lost the ability to walk, talk and eat independently.

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Changing Doctors' Perspectives

"We bring in pictures – especially if we're going to be in the hospital for a while."

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Cyclodextrin

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Motivation to Use Cyclodextrin

"There's a possibility that Jessie can be helped and...other children with NPC can be helped as well."

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Using Cyclodextrin

"The cyclodextrin treatment takes about six hours of IV and six to eight hours of observation."

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Results of Cyclodextrin

"One of the markers that they track in the blood had dropped by 75%."

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Pursuing Cyclodextrin

"We'd had quite a bit of communication with other members of the NPC community."

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On Cyclodextrin

Recommending

Anthony and Lisa recommend cyclodextrin to other families fighting NPC.

Hope

The Leonis feel hopeful, now, because their daughter Jessica is using cyclodextrin.

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Cannabis Oil

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Cannabis Oil

"Jessie hasn't had a seizure in 3 weeks. She's never done that...in 10 years."