MEMPHIS, Tenn. -- On a Wednesday afternoon, Jeremiah Lennon is sitting on a chair next to his twin bed in the Southeast Memphis home he shares with his brother, mom and grandmother. He presses controller buttons one after another as he navigates his way through a video game.
In most ways, Jeremiah Lennon is a typical middle school teenager.
“I do G.F.X. design and I like graphic design," he said.
The 15 year old eventually wants to be a computer programmer and make video games. But it wasn’t that long ago when he couldn’t even plan his next day, let alone a future as an adult.
Jeremiah’s mom Tiffany Denham found out her son had sickle cell disease when he was 2 months old.
“The Sickle Cell Association called and said they wanted to re-test him because they test all African-American children when they're born,” she said. “They came out to my house to tell me the result. I really didn’t know how serious sickle cell was. They were like, 'He does have it. He has SS: the worst type.' I just was like, ‘Oh my gosh. My child has this disease?’”
It took a few years for him to start talking about his symptoms. His grandmother Beverly remembered the day.
“He was 5 years old. He said, ‘My ankle hurts.’ And I knew what it was then. He didn’t know," Beverly Denham said.
“I had back pain. It was a sharp pain. It wasn’t just that. Sometimes I used to panic because I had that type of pain,” Jeremiah said.
By the time he was 9, it had gotten so bad, he was often going to the hospital where they lived in North Carolina.
But most doctors there didn’t know how to treat sickle cell and the associated pain, according to his mom. A lot of patients have that problem outside big cities.
He often had trouble breathing during his crisis attacks. She saw others who died from the disease. She feared for her son's life.
“I was petrified. I was like, ‘I’m not going to have this child long.’ I was like, ‘How is this going to work out? I have to do something,’” Tiffany Denham said.
She had an uncle in Memphis who invited her to move, so she talked to Jeremiah’s doctor. He then told her about St. Jude’s Comprehensive Sickle Cell Center.
“I left everything. When I came here I just came with my boys. I had one box with their clothes in it,” Tiffany Denham said.
Soon after they arrived, Jeremiah had a sickle cell "crisis" attack that landed him in the hospital. Le Bonheur referred him to St. Jude's clinic for treatment. Jeremiah started regularly going to St. Jude and they put him on a specialty drug called hydroxyurea.
“There has been extensive research and there’s evidence that hydroxyurea decreases a lot of these complications, decreases the pain, decreases the severity of acute chest syndrome,” said Dr. Latika Puri, a sickle cell treatment specialist in St. Jude Hematology.
“They understood what he was going through and how to treat it. That was it for me. I wasn’t turning back,” Tiffany Denham said.
She said they’d spend days at the hospital while doctors monitored Jeremiah’s response to the medicine.
“When we first started going, I didn’t have any money. They made sure we ate. They pay for his medicine,” Tiffany Denham said.
The drug and all-encompassing program made a big difference.
Today, Jeremiah only goes once every few weeks and acts like a different kid; his mom said he even raked and bagged leaves on their front lawn recently. Before his St. Jude treatment, he would not have the energy or stamina to do that.
“I do not believe we’d have my son if Jeremiah didn’t start going to St Jude. I believe Jeremiah would be gone now," she said.
"If I was still in North Carolina, I’d be having pain all the time. So yeah, if I didn’t go to St. Jude, I think all kids should go to St. Jude," he said.
Tiffany said it hasn't been easy uprooting their lives, but when she sees her son and hears about his dreams for the future, she knows it's been worth it.
You can find more information about St. Jude's Comprehensive Sickle Cell treatment program here.
St. Jude is also having a free conference for sickle cell patients and providers on May 19: https://stjude.cloud-cme.com/aph.aspx?P=5&EID=1823