Balloon release set for Lexington siblings

Cody, Kayla Ruthven battling rare disease, headed for NIH treatment in Maryland

LEXINGTON—A balloon release is set for 3 p.m. Monday, Jan. 13, for a Lexington brother and sister, who are headed to Maryland to participate in a clinical drug study they hope will save their lives.

Cody and Kayla Ruthven, of Lexington, (brother and sister) are flying to The National Institutes of Health in Bethesda, MD, according to their mother Dena Ruthven.

Cody, 16, and Kayla, 12, were born with a rare genetic disease. They are the son and daughter of Scott and Dena Ruthven, who provided the following information.

Niemann-Pick Type C (NPC) is an extremely rare neurodegenerative disease. Currently there are approximately 500 diagnosed cases worldwide, she said.

NPC has often been initially diagnosed as a learning disability, “clumsiness,” and delayed development of fine motor skills.

It is not uncommon for a family to spend several years seeking a diagnosis before NPC is identified.

Children with NPC lack, or have a deficient protein whose job is to process the cholesterol their cells make, like it should. This results in a buildup of cholesterol in their brain, liver & spleen. This build up in the brain essentially clogs the neuropath ways the brain uses to communicate with the body and over time actually kills some of the brain cells. Signals can’t get where they need to go.

Eventually over time, this communication breakdown leads to loss of memory, mobility, speech, the ability to swallow and eat without the aid of a feeding tube and ultimately the loss of life.

“Cody and Kayla have been accepted to participate in a clinical trial for a possible therapy drug for NPC at The National Institute of Health (NIH),” Dena Ruthven said.

They will be flown to the NIH in January and stay for two weeks.

Dena Ruthven said the drug will be given through lumbar puncture (spinal tap).

“Cody and Kayla will be sedated for this procedure. The following day, they will have blood drawn every hour for eight hours.”

She said the brother and sister will have to go back to the NIH for one week every month to get the drug administered, and blood drawn. There are only nine children currently participating in the NIH trial.

“Cody and Kayla’s schools in Lexington will send them off to Maryland with well wishes and strong hope with a balloon release,” Dena Ruthven said.

For more information on Niemann-Pick Disease, visit the foundation’s website at:

Those interested may follow their “road to a cure” at:

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2014-01-09 digital edition

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