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The Prado Family

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Ruben

Ruben, Saioa's dad, fights NPC using cyclodextrin and advocates for easier access to the medicine.

Laura

Saioa's mom, Laura, fights NPC alongside her daughter, driving long distances to get Saioa treatment.

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Saioa

The Prados' daughter, Saioa, has NPC. In April 2014, she received her first injection of cyclodextrin.

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Niemann-Pick Type C

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Symptoms

"When she was one year old, she started to have her eyelids very swelled and closed. She could hardly open them, especially when she was tired."

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Cyclodextrin

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Using Cyclodextrin

"We realized the two most effective ways to administer cyclodextrin are intrathecal injections...or placing an ommaya reservoir."

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Early Intervention

"I would like it to be easier for someone who wants to take cyclodextrin...I wish [we'd gotten it] sooner."

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Results

"She is much more relaxed. You can leave her alone. She is sitting again. She doesn't have excellent coordination, but she can manipulate things."

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Pursuing Cyclodextrin

"You can't stay in your house watching your child fade away. You have to try something."