Emmanuel “Manny” Johnson, Jr., shares many loves with his little brother, Aiden — from basketball to video games. One thing he wishes they did not share is sickle cell disease (SCD), so Manny is playing a role in a new effort to improve treatment for patients like 7-year-old Aiden, himself and others living with the inherited blood disorder. …
When Paul and Liliana Rojas talk about their life, they describe it in one of two ways — the way it was before their sons, 10-year-old Brandon and 7-year-old Brian, were diagnosed with ALD, and the way it is after. Their story is one of heartbreak — but also hope, in the form of a new clinical trial.
ALD is short for adrenoleukodystrophy, a debilitating brain disease that simply goes by its initials.
“Life before ALD was pure happiness without worries,” Paul says. “It was anything a parent could wish for — two boys with no medical issues, active, athletic, the healthiest boys ever.”
The two were inseparable. They played sports together in their hometown of Dover Plains, New York; idolized superheroes; danced like crazy; and dreamed of someday inventing video games. Brian was Brandon’s shadow. …
Addressed to my mom, the paper has a question and two boxes, one “yes” and one “no,” written with the careful precision of a 7-year-old.
I am sad of Ethan. You too?
A check marks the box.
— Yes. Yes, I am sad too.