Nightly News | October 06, 2013
>> 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.