SUMMIT, N.J. — The smile was hidden behind her respirator, but Lisa Mauriello’s eyes sparkled as she received her first dose of an experimental drug called Toferson, which doctors believe could halt the progression of the rarest form of ALS currently tearing away her quality of life.
From dancing with her son last January to being confined to a wheelchair at his graduation, Mauriello — who turned 52 last week — has lost the ability to speak, walk and write.
Her husband, Bob Mauriello, said her mind is fine but her body has shut down.
For months, Biogen, which has had Tofersen in clinical trials, has denied the Mauriellos access to the drug, claiming it would have compromised the test.
“She would have lost less functionality if this could have happened months ago,” Bob Mauriello said.
But Lisa Mauriello’s plight caught the attention of people worldwide. They staged demonstrations and well over 100,000 signed petitions in an effort to get Biogen to relent.
Finally, this month, the biotech company ended phase three of their trials — which ended giving people placebos — and allowed Lisa Mauriello to access it.
“We’re thrilled this day has finally arrived,” Bob Mauriello said.
Since PIX11 News last visited with Lisa Mauriello in April, her condition has deteriorated so rapidly, some doctors feared waiting for the drug until now would be too late to help her.
“At first, we thought she might not be alive at this point. “
Lisa Mauriello recognized this and made a dying wish to see her three sons graduate from college, high school and middle school.
There’s still a long way to go. Lisa Mauriello needs four more spinal injections of the experimental drug, and it could be many weeks before it’s determined whether or not it’s helping her. The family is hopeful it will at least stop further progression of the disease.
Adding to the benefits of the drug is the infusion of love of a family that is taking it all one day at a time.