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The Reedy Family

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Shannon

Chase's mom, Shannon, is actively pursuing a treatment for her son's illness.

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Cameron

Chase's big brother Cameron does not have NPC, but he fights for Chase in his struggle against the disease.

Chase

Chase was born in August 2009. In September 2011, Chase was officially diagnosed with Niemann-Pick Type C, and four months later he began to use cyclodextrin. However, the FDA prevented Chase from using cyclodextrin for around one year, during which time the disease progressed significantly. In December 2013, he was again allowed to fight NPC using cyclodextrin.

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Family Life

"You're going to be devoting most of your 'free' time to pursuing this."

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Niemann-Pick Type C

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Symptoms

"I couldn't put my finger on why his eyes looked weird...it was supranuclear gaze palsy, where they can't look up without moving their head."

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Cyclodextrin

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Using Cyclodextrin

"Once a week, bright and early, we drive up to Boston...they run an IV infusion over six hours."

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Results

"He started developing as soon as we put him on it. Chase was able to walk; he wasn't able to walk before that."

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On Cyclodextrin

Pursuing

Chase's NPC onset very early, which meant Shannon needed to do something quickly to save her son's life.

Recommending

The best immediate option for your child after diagnosis is to try to get added to the NIH's cyclodextrin trial, or to get a physician to write you a protocol for cyclodextrin.

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Losing Cyclodextrin

"The FDA shut us down...he was on a couple other drugs, but he'd been on them for five months. One dose of cyclo had him out of the ICU and on the regular floor."