Nate R .

Over the next four years, Jenna and Tim would become Nate’s foster parents and then, on National Adoption Day in 2022, they officially adopted him.

But there’s another part to Nate’s story. Nate has sickle cell disease, an inherited blood disorder that interferes with the way blood flows through the body. To save his life when he was a toddler, doctors amputated both of his legs below the knee, his left arm, several fingers on his right hand and part of his ear. When Jenna and Tim took Nate into their family, they also took on the responsibility for his medical care. “It was overwhelming. I had heard of sickle cell, but I didn’t know anything that came along with it,” Jenna said. 

A painful condition

The pain that accompanies a sickle cell crisis—when the sickle-shaped red blood cells clump together and block blood flow--can be intense. As Nate said, “The pain is almost all day when I have a sickle cell crisis. It hurts really badly. When you have those crises, you know, we give the numbers like, what’s the worst it could get? It gets to a 10 out of 10.” 

When Nate was in second grade, he experienced major sickle cell crises every month. Each episode meant another hospital stay at Connecticut Children’s. Thanks to the care he’s received, Nate is more in tune with his body now and able to recognize crises at an early stage when it can be managed with Tylenol instead of morphine. “When I do have a sickle cell crisis, I’m not as nervous or scared anymore because I know those nurses will be there for me,” he said.

In addition to regular appointments with hematologist/oncologist Donna Boruchov, MD, Medical Director, Pediatric Sickle Cell Program, Nate sees orthopedic surgeon Kristan Pierz, MD, Medical Director, Center for Motion Analysis, for revision surgeries on his amputations and new prosthetics as he grows. He also has liver and gastrointestinal issues and sees gastroenterologist Karan Emerick, MD, Director, Center for Pediatric Liver Disease.

Lighting up the stage

Today, Nate is 13 and in the seventh grade at an arts magnet school, where he’s an A student. He’s an experienced actor and has performed onstage at Waterbury’s Seven Angels Theatre. He’s also a doting big brother to his three-year-old sister, Julien, and a “pretty good chef” (according to Mom). In the summer, he likes to play basketball in the park.

His advice for others facing the challenge of sickle cell disease is, “to keep persevering, and to keep having hope and faith that you’ll make it and it’s going to be okay. Just keep believing and never give up.”