Hayley was diagnosed with Niemann Pick Type C (NPC) in October of 2011. However, she had been living with the symptoms since she was six- years-old.

She started having learning issues around age and was put in a special education environment. At 10-years-old, she started to develop seizures which went uncontrolled even after trying many different medications. In March of 2011, she had brain surgery to remove the tissue where the seizures were coming from. The pathologists ran tests on the tissues and came up with evidence of a lysosomal storage disease. After further testing, the diagnosis was Niemann Pick Type C. We asked Dr. Elizabeth Berry-Kravis from Rush University Medical Center whether she would treat Hayley with a drug called Cyclodextrin on a Compassionate Use Program. There were several families in the United States, Brazil, Spain and Japan who were treating their kids with Cyclodextrin with favorable results. Dr. Kravis agreed. On December 23rd 2013, Hayley received her first Cyclodextrin injection which is delivered via a spinal tap. She just had her 91st injection.

We have seen good results since Hayley was started on Cyclodextrin. Her swallowing improved and so did her gait. She started to sing songs she used to sing many years ago. We keep Hayley engaged and active by having her participate in dance, buddy baseball and in Special Olympics where she participated at the state level several times in basketball and track.

There are three clinical trials now, with two using Cyclodextrin. Dr. Kravis participates in the VTS-270 trial. She currently treats 22 patients both via Compassionate Use Program and as participants in the clinical trial, which is unheard of. She will not say no and says, “I just felt like I wouldn’t be able to sleep if I didn’t do it”.

15 thoughts on “Hayley Fights Niemann Pick Type C Using Compassionate Use Program and Cyclodextrin”

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