Ike Chuba was diagnosed with sickle cell disease when he was just one year old – and he almost didn’t make it to his second birthday. But thanks to the care his team at Levine Children’s Hospital provided throughout the years, Ike is not just surviving – he’s making plans for the future.

News, Child Health | 2 years ago

Diagnosed with Sickle Cell Disease at One Year Old, Ike Is Now Taking College Head-On

Ike Chuba was diagnosed with sickle cell disease when he was just one year old – and he almost didn’t make it to his second birthday. But thanks to the care his team at Levine Children’s Hospital provided throughout the years, Ike is not just surviving – he’s making plans for the future.

When Ike Chuba was just one year old, he started gasping for breath as he tried to climb the stairs in his home. His mother became concerned and brought Ike to the emergency department. His mother was right to be worried. Ike’s condition was so serious that the medical team called a Code Blue — signifying that Ike had gone into cardiopulmonary arrest — and even pronounced him dead. Ike lived, but ended up in a coma for a month.

Upon arriving at Atrium Health’s Levine Children’s Hospital, Ike was diagnosed with sickle cell disease (SCD). At first, Ike’s medical team thought that if he ever came out of his coma, he would have very limited physical and cognitive abilities. Fortunately, Ike was stronger than they thought. 

An invisible illness

Sickle cell disease is an inherited condition that is the most common inherited blood disorder in the U.S. According to the U.S. Department of Health & Human Services, sickle cell disease affects 70,000-80,000 Americans.

It occurs when a person’s red blood cells appear misshapen, taking on a sickle (or crescent) shape. These sickle cells can cause anemia (a condition in which you lack enough healthy blood cells to carry adequate oxygen to your body’s tissues), pain, and infections. Further complications can arise when the cells block blood flow in the body.

Currently, the only cure for sickle cell disease is a stem cell transplant (also known as a bone marrow transplant), where a person has their stem cells replaced with healthy cells from a donor. To receive a transplant, the patient must meet very strict criteria, which leaves only 18% of patients as eligible for the procedure. For patients who don’t fit the criteria, there are options available to help manage sickle cell disease, including the use of antibiotics, pain medications, and transfusions.

The good news? Over the years, Levine Children’s Hospital has made tremendous strides in their research to improve long-term outcomes for patients living with sickle cell disease through a number of clinical trials. Another study uses gene therapy to transfer healthy fetal hemoglobin to people with sickle cell disease.

Learning to live with limits

As a young child, Ike learned how to live with sickle cell disease – but it wasn’t always easy for him. His body didn’t get as much oxygen as it needed, which made it difficult for Ike to do many of the activities he loved – like playing basketball.

But of all of the symptoms associated sickle cell disease, the most debilitating and commonly reported issue to manage is the various levels of pain. People with sickle cell disease often endure periods of what is called a sickle cell crisis –- agonizing episodes that can last several hours to several days. “Sometimes I couldn’t breathe, or couldn’t even move, and it would be very painful,” says Ike. He continued to have his condition monitored and managed at Levine Children’s Hospital, which has a full pediatric sickle cell program under the direction of Daniel McMahon, MD.

A life-changing stem cell transplant

When Ike was 17 years old, he finally had his chance to get a stem cell transplant. His pediatric hematology doctors referred him to specialist Michael Kent, MD. Ike’s medical team worked together to make sure Ike could receive the latest treatment using the most advanced protocols possible.

According to Dr. Kent, who performed Ike’s stem cell transplant, Ike was incredibly lucky. His brother turned out to be the perfect match for him since they were an identical sibling donor match – something that less than 25% of sickle cell patients have.

“There have been tremendous advances in treatments for sickle cell disease in the past 20 years,” says Dr. Kent. “We’ve been working hard to make sure transplants are safe for sickle cell patients.”

Ike was treated according to a protocol that was originally developed at the NIH (National Institutes of Health). With this type of treatment, Ike didn’t have to receive chemotherapy and received one dose of radiation – from which he had minimal side effects from the treatment. Even so, Ike spent more than a month in the hospital in order to prepare for his transplant and recover from it. This happened to coincide with his junior year of high school, when he had lots of exams to take.

“I went from school to the doctor and back all the time,” says Ike. Despite all the obstacles he faced, Ike managed to take his exams early and graduate from high school.

Post-transplant life

Now, Ike is a college student at the University of North Carolina at Greensboro and he’s majoring in computer science. Ike’s studying, acting, and playing basketball – not to mention breathing easier.  

Ike describes the care he received at Levine Children’s Hospital as “not the type of healthcare you could get from just anybody. Everybody was really caring – they helped me with everything. All the doctors and nurses knew my name.”

One year after his transplant, Ike still goes to Levine Children’s for follow-up care to make sure he’s in top shape.  

“When Ike comes to visit, everyone wants to say hello to him – he brings a lot of joy to everyone around him,” said Dr. Kent.

Learn more about sickle cell disease care at Levine Children’s Hospital and Levine Cancer Institute:

Download our free ebook on sickle cell disease