SUMMIT, N.J. — Unable to get a potentially life-saving drug, Lisa Mauriello is slowly succumbing to ALS.
But on Wednesday, she managed to fulfil a dying wish, to see her son graduate from high school.
“Pomp and Circumstance” on liberation day for 279 students of Summit High School in New Jersey. It’s a joyous day for families and friends but a bittersweet one for Mauriello, in a wheelchair and on a ventilator to watch her son Luke graduate with honors.
Mauriello has the rarest form of ALS, also known as Lou Gehrig’s Disease. She has lost her ability to write or speak. But the sparkle in her eye in seeing her son graduate spoke volumes.
Lisa’s ALS takes away the ability to control one’s muscles. Doctors say her form of the disease has progressed so rapidly it could lead to death within a year. Recognizing that as a possibility, Lisa drafted a dying wish: to live to see the graduation of her sons.
In the two months since we last visited with Lisa, her condition has gotten worse.
“Lisa has gone from walking and dancing with our sons to being on a ventilator and a wheelchair,” said her husband Bob.
Surrounded by love, Lisa continues to battle the biotech firm BioGen. They have a drug in clinical trials called Toferson that doctors think could extend her life.
But on several occasions, BioGen has turned down requests for the drug, claiming it could compromise the results of their tests.
Whether they get the drug or not, Lisa Mauriello got to see her dying wish on Wednesday night.