Just a year ago, in the Succos 2019 edition of Mishpacha, we featured the story of Baby Eliana, who was born with a neurodegenerative disease called Spinal Muscular Atrophy (SMA). In May 2019, the FDA approved a revolutionary gene therapy, Zolgensma, as a potential cure for children with SMA up until age two. Eliana was diagnosed in June 2019, just a few weeks short of her second birthday. By that point, her crawling had become painfully slow and sluggish, she’d lost the ability to roll, and her overall motor functioning was weakening. She was headed toward a life of total dependence. Zolgensma seemed her only hope — but the cost was staggering, and the timeframe heart-stoppingly narrow.
After failing to secure funding from their insurance company, the race was on for Ariel and Shani Cohen to raise $2.2 million, the cost of the drug, with just six days to go until she turned two. In an unprecedented display of unity and caring, the Jewish world mobilized like never before, and the entire sum was raised in just three days. The day before her second birthday, Eliana — whose name had since been changed to Chana — received the life-giving treatment.
How did she fare since then? One year later, we checked in with the Cohens for an update — and received a recap on a year of prayers, progress, tears, and stubborn hope for their miracle child.
Yesterday morning, Chana received the gene-therapy treatment that can potentially give her a normal life. I should be thrilled. But to be brutally honest, instead of floating through a cloud of euphoria, I’m slogging through a fog of overwhelm.
Zolgensma has the potential to cause liver failure, so Chana needs her blood drawn daily to monitor her liver-enzyme levels. Having been a human pincushion this past year, she’s developed a visceral fear of needles, and she resists them as if she’s fighting for her life. After an eternity of coaxing, cajoling, and bribing, the nurse managed to draw her blood, and minutes later Chana fell asleep, utterly depleted. We were at the door, thankful to finally be on our way, when we heard the nurse say, “Mr. and Mrs. Cohen, I’m really sorry, but we need one more vial.” Chana went even crazier the second time around. As I fell into bed at 3:00 a.m., all I could think of was how much strength we’ll need to traverse the exhausting road ahead of us.
