3-Year-Old with Sickle Cell Disease Finds Miracle Close to Home

Julian Jarvis has been in danger since the day he was born. Diagnosed with sickle cell disease, he faced a life overshadowed by constant pain, isolation, hospital visits and the potential of life-threatening strokes.

Unfortunately, Julian wouldn’t have to wait long before feeling the effects of his disease.

When he was 4 months old, he started having his first complications with the sickle cell disease, including painful fingers and toes, and viruses that would give him a fever and pain that lasted for days.

His parents, Windfield and Tara, and his older brother, Jaylen, also suffered.

When even catching a simple cold could lead to ER visits, life was anything but normal for the Jarvis family. A trip to the grocery store meant someone had to stay in the car with Julian. Splashing around in the pool with his brother had to be carefully monitored and limited to keep his body temperature in range.

“We rarely did anything,” Windfield Jarvis said. “We didn’t go on vacation and stuff like that because we wanted to stay close to the hospital in case something would happen. It was a lot to deal with.”

Sickle cell disease is a genetic disorder in which the red blood cells mutate, becoming stiff and sickle shaped. That means they don’t glide easily through blood vessels and can block the flow of blood to the rest of the body.

“This is a devastating disease that affects patients throughout their life, which includes multiple pain episodes, bad pneumonias, and could also have a risk of stroke,” said Dr. Rikin Shah, the director of Pediatric Bone Marrow Transplant and Cellular Therapy, a part of the Haley Center for Children's Cancer and Blood Disorders at Orlando Health Arnold Palmer Hospital for Children.

The Quest for a Cure

To help them in their quest for a cure, the Jarvis family would turn to the very people who helped bring their baby boy into the world.

“Julian's parents had been very vocal about trying to find the cure and not just settle with disease-modifying treatment,” Dr. Shah said. “Because of their initiative, the family reached out to our transplant team to identify if transplantation would be appropriate for Julian.”

Developed in the 1950s, blood stem cell transplantation involves taking healthy blood from a donor’s bone marrow and transplanting it into a patient where it eventually completely replaces the diseased blood cells.

“In the last couple of decades, we have seen a lot of progress in the way we do sickle cell transplantation, " said Dr. Shah. “Earlier we would only offer stem cell transplantation to patients who have had complications, but by that time it might be too late because they now have had strokes. Now we are able to intervene and offer transplantation and cure them at an earlier age.”

That gave the Jarvis family confidence.

“The burden wasn't just ours to carry; Arnold Palmer was a great team to match up with and would help us take care of our child as a team,” Tara Jarvis said.

The only thing Julian needed, besides a house full of prayer and courage, was a donor with a 100 percent match.

“Dr. Shah explained to us that with bone marrow transplants, it was best having a 100 percent match, and he said siblings would most likely be that 100 percent match donor,” Windfield Jarvis said.

Blood Brothers

Julian’s 4-year-old big brother, Jaylen, was born for this.

“From the very beginning, Jaylen has been totally in love with his brother,” Windfield Jarvis said. “From the time Julian was in the womb up until he arrived, Jaylen understood his role as a big brother, and he really took up that challenge to protect his little brother and be there for him.”

Despite their son’s courage and his eagerness to help his little brother, Windfield and Tara Jarvis had themselves tested to see if either of them were a match and could spare their son such a burden. But when only Jaylen came back as a 100 percent match, it was Jaylen’s brave decision to give his brother the greatest gift of all.

“We made sure we conveyed everything to Julian, as much as he could understand as a 3-year-old, what this whole process was going to be like, and what Jaylen was going to do for him,” Windfield Jarvis said. “He was excited that his big brother was going to step up for him like a superhero and take care of him.”

Curing Julian of his sickle cell disease was certainly a heroic effort and one that took an entire team of heroes to accomplish.

We rarely did anything. We didn’t go on vacation and stuff like that because we wanted to stay close to the hospital in case something would happen. It was a lot to deal with. – Windfield Jarvis

“The care team is heaven-sent,” Tara Jarvis said. “I could not have asked or prayed for a better group of people to take care of our Julian and to take care of us. They saved his life. We can't thank them enough.”

Forever Best Friends

With his big brother’s blood pumping through his body, Julian, now 3, and Jaylen share a bond like no other. Life for the Jarvis family is better than ever.

“Julian is just really excited about life and everything about it,” Tara Jarvis said. “He loves the littlest things that we might take for granted. My hope for the boys is that they would live their life to the fullest and make their dreams a reality. Whatever they want, the sky is the limit.”

Her husband agrees. “Jaylen is truly forever Julian’s best friend, his superhero, his awesome big brother.”