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 didn’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.
Beedie Savage – President of Quantum Units Education