( CNN ) -- The happiest day in Justin Smith 's life -- next to the day his daughter was born -- was March 5 , 2013 . When his phone rang , he looked down and saw the 301 area code . It must be the National Institutes of Health , he thought . He did n't know anyone else in Maryland . Indeed , Dr. Brigitte Widemann was calling to say that after five months of waiting , Smith 's 12-year-old daughter McKenna had been accepted into a clinical trial at NIH headquarters in Bethesda , Maryland . She could begin the week of September 30 . Smith thanked the doctor and hung up the phone . `` Baby , hopefully we can get you a cure now , '' he said as he hugged and kissed his daughter . McKenna has neurofibromatosis , a rare genetic disorder . Countless tumors in various parts of her body tangle around her nerves and grow into her soft tissue . One tumor the size of a grapefruit crushed her esophagus and her carotid artery when she was 4 years old . Another tumor collapsed a lobe of her right lung . The growths are starting to cut off sensation to her right arm and left leg ; soon she will lose function of them entirely . She 's on four different pain medications , including two types of morphine . McKenna has had two surgeries and 24 rounds of radiation . The tumors have continued to grow . She underwent medical experiments to use the drugs thalidomide and Gleevac . Both were a failure . Doctors have told Smith his daughter will likely die before her 20th birthday . She turns 13 today . `` This NIH trial is her last hope , '' Smith said . The Smiths boarded a plane Monday from their home in Cape Coral , Florida , to head to Bethesda . But during the trip -- even as they checked in at the Children 's Inn at NIH -- they were n't feeling hopeful that McKenna would be able to start taking the experimental drug , called hydrogen sulfate , on Friday as scheduled . Hydrogen sulfate , or AZD6244 , has been tested in adults and children with cancer . NIH doctors think it might be able to prevent benign tumors like McKenna 's from growing , or at least shrink the tumors and slow down their growth . Smith feared the government shutdown would keep McKenna from being able to start the study at all . McKenna is one of about 200 new patients , including some 30 children , who come every week to the NIH Clinical Center in Bethesda , Maryland , to begin clinical trials . These patients are being told they will have to wait until the government starts up again to start their trials , according to NIH spokesman John Burklow . Taking care of McKenna , as well as her disabled grandmother , is a full-time job for Smith , a single father . An Army veteran , he 's used to hard work and trying times , but as he waited Monday , Tuesday and Wednesday for word from the doctors , he grew more and more worried -- and angry . On Wednesday he tweeted , `` # governmentshutdown needs 2 end # Now hurting sick people . have the # House come here to apologize to my young daughter & others . '' `` Finally we 're here and our government ca n't get its act together , '' he told CNN . Then at 3 p.m. Wednesday , there was a turnaround . For reasons that are unclear , McKenna 's doctors said she would be able to start taking the hydrogen sulfate on Friday as scheduled . No one knows how many other new patients like McKenna also managed to get into their NIH studies despite the government shutdown . `` If a child or adult patient is in desperate need for treatment , those people will be handled in a different manner , '' Burklow said , `` and will more than likely be seen by physicians or nurses at the NIH Clinical Center . '' While relieved that his daughter can start the trial , Smith worries about the kids who wo n't be able to . There are the other patients , like McKenna , who were supposed to start this week at the NIH Clinical Center , and if the shutdown continues , another 200 patients every week will face the same dilemma . Even though McKenna 's been lucky , the shutdown has still made her trip more difficult . With 75 % of NIH 's employees on furlough , the testing takes much longer than it should . An eye doctor 's appointment this week , for example , should have taken one hour , but lasted more than three . Exhausted and in pain , McKenna had to take a dose of morphine to get through it . And then another setback , this one unrelated to the shutdown : doctors found a new tumor in McKenna 's eye . This medical complication means she might not be able to get the drug Friday as planned . Smith said he knows what he would do if he could talk to members of Congress in person . `` I 'd put my daughter in their face and I 'd say , 'Why are you putting politics above my daughter 's life , or any other child 's life ? ' '' he said . `` This is not a game . '' McKenna said her message to Congress would be much shorter . `` This is stupid . '' CNN 's John Bonifield and Val Willingham contributed to this piece .
Some 200 new patients , including young children , begin a clinical trial at least every week . With the government shutdown , these patients are being told they will have to wait to begin . But Smith will be scheduled to receive treatment , doctors say , on Friday .