Nightly News   |  October 06, 2013

Government shutdown blocks girl from clinical trial

More than 13,000 National Institutes of Health workers are furloughed, leaving those who were to participate in clinical trials without access. NBC’s Michelle Franzen reports.

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>> among the many agencies affected by the shutdown, the national institute of health and that has interrupted vital clinical trials for hundreds of patients with life threatening diseases.

>> reporter: at first glance, abby mccurtain looked like any other child her age, smiling and playing with mom and dad at home in plymouth, massachusetts. but at just 2 1/2 years old, they say she's lived longer than doctors expected.

>> she can't sit or crawl or walk. day to day she's on a feeding pump for seven hours a day.

>> reporter: she suffers from lee's disease a rare incurable disorder that affects the center nervous system causing seizures and the loss of motor skills and muscle tone. this past week, abby was scheduled to participate at a new clinical trial at the national institute of health . but 73% of nih workers are furloughed due to the government shutdown . and new trials are on hold.

>> we were angry. you can angry for my daughter and how can -- how can they not get along to make this work?

>> abby .

>> reporter: along with anger, the mccurtains say they lost hope. the drug being tested would give her a better quality of life .

>> i want to give her the best. and having that drug so close to our hands and ripped away is, it's unmangable.

>> reporter: according to the nih, its hospital enrolls about 200 patients a week for new trials. roughly 30 of those patients are children. all in limbo until a deal is reached. greg and heidi say they are now searching for privately funded clinical trials .

>> we won't stop at anything until we get her on the treatment that she needs and deserves.

>> reporter: one family that struggles and waits while caught in the cross hairs.