CHICAGO (WLS) -- Thousands of people in the U.S. live in pain due to sickle cell anemia, and many of them even lose their lives. The disease affects Black people more often than any other ethnicity.
Braxton Hubbard battled sickle for years, but says a new research treatment is changing his life. The Hubbard family spoke about the loss of one son to the disorder and the joy of freeing another.
Simple moments are cause for celebration in the Hubbard household. These are the moments they prayed for.
"You just count your days because you just don't know how long you're gonna be on this earth," Braxton Hubbard said.
Not so long ago, 28-year-old Braxton Hubbard was living a painful life with sickle cell anemia.
"We were there at Christmas, Thanksgiving, birthdays," he said. "All kinds of holidays we've missed because of all of the hospitalizations."
Sickle cell is an inherited red blood cell disorder more commonly found in Black people. It causes multiple issues, including organ damage, infections and severe pain.
"You have like strong pain meds and that doesn't even give you any relief, at all," he said.
Linda Hubbard watched her youngest son suffer for 27 years and even lost her oldest, Brandon, to the disease in 2008. The moment shook their family's core.
"After losing Brandon and then Braxton going through it, it's like, here we go again, being worried and I'm like, when is it gonna stop," Hubbard said.
But, they say fate took a turn when Dr. Alexis Thompson with Lurie Children's Hospital contacted the family about a gene therapy research program aimed at giving sickle patients a future without pain.
"For the first time, we're able to target the gene, correct it in his own cells in the lab, then return the cells to his body," Thompson said.
The gene therapy treatment essentially overrides the single mutation that creates sickled cells, and from there the body creates healthy ones.
"Their exact words were: 'prepare yourself to go to hell and back,'" Linda Hubbard said. "And they weren't lying."
"My body reacted to it, and it was not kind to me," Braxton Hubbard said. "I vomited, I would laugh and I would vomit."
But now, Braxton says he finally feels alive.
"I feel like it's a dream, I'm living every day sickle cell free," he said.
It's a freedom his big brother Brandon never got the chance to see.
"I'm going to live life for him," he added.
Braxton is currently writing a book about his experiences and wants to become a motivational speaker. And as for the gene therapy treatment, it's still in the research phase.
As we approach the Great Chicago Blood Drive in January, it's important to remember sickle cell can require patients to receive thousands of blood transfusions during their lifetimes, shining a light on the need for donors.
So, if you'd like to donate, the Red Cross collects blood daily at their Chicago headquarters in the Illinois Medical District. You can also visit RedCrossBlood.org to find a mobile drive near you.
Sickle cell anemia patient shares how gene therapy treatment changed his life