Bone marrow donor talks to 8-year-old recipient for the first time

by: Hope Jensen Updated:


It was a phone call that brought Ellis Edwards to tears.

The voice on the other end was that of 8-year-old Hayden Butler, a cancer survivor who Edwards had never met. But the connection they share is one that will last a lifetime.

Two years ago, Edwards donated his bone marrow to save Hayden’s life.

Then 6-year-old Hayden suffered from acute lymphoblastic leukemia. His chances of finding a bone marrow match were one in thousands.

That match was found in Edwards, a University of Georgia student who took part in a world-record breaking Marrow-thon in Athens.

It all started in March 2012 with an Athens sixth-grader named Kajal Patel. Kajal, who was battling an autoimmune disease, was in need of a bone marrow transplant, but out of the 10 million people in the national registry, no one was a match. So her sixth-grade classmates at Athens Academy set out on a mission to register people for “Be The Match,” a bone marrow registry.

The kids put together bone marrow drives across the city. They held a Marrow-thon on the University of Georgia Campus that broke a world record for the number of new registrants in just 24 hours. In total, over a few short weeks, the group of dedicated middle-schoolers signed up 8,000 new people to “Be The Match.” To put that into context, many recruiters for the organization set a goal of signing up just 1,500 people in an entire year. Not only did the group find a match for their friend, they also found matches for several other people, including Edwards and Hayden.

“I was just on campus and passed through, and there were middle-schoolers saying do this and save a life,” said Edwards. “It wasn’t really a decision for me.”

Edwards, who was a 21-year-old sophomore at the time, said he never expected anything to come of it, but a few months later he received a call that he was a 99 percent match for a 6-year-old boy suffering from leukemia.

“I thought the odds were really slim,” said Edwards. “For me it just worked out that I was selected really quickly. I was basically told that I was the best of his potential matches. All I knew at the time was that he was a 6-year-old male and he was suffering from ALL.”

At the beginning of his junior year “Be The Match” flew Edwards and his mom to Georgetown hospital for the surgery.

“They make it super easy for the donor,” said Edwards. “They stuck me with an IV and I fell asleep. When I woke up I was kind of sore but that was as bad as it ever got. It was not very painful, recovery took less than a week and anyone I know could have done it -- I just happened to be his best match.”

After that, life continued for nearly two years, without Edwards knowing the outcome of his donation.

“For a number of privacy reasons, the donor and recipient remain anonymous throughout the process. After a year you and the recipient can both decide to share information. Once both people have done that, the organization will share that information with you. But for that time period, he was just my 6-year-old recipient, and I was just his 21-year-old donor. And everyone said a lot of prayers,” said Edwards.

But that all changed this week when Edwards received a phone call from Hayden and the Butler family.

“It was super emotional,” said Edwards. “I didn’t realize it was going to be because for so long it was just this anonymous 6-year-old.”

His formerly anonymous 6-year-old turned out to be 8-year-old Hayden.

“He lives in Kentucky, rides four-wheelers and has an incredible family that fought with him through his cancer every step of the way,” Edwards posted on his Facebook page. “I talked with his mom and dad, and I had to sit down and hold my phone with both hands because I was trembling so badly.”

The family sent him pictures of Hayden and of the bone marrow on the day it arrived. Hayden’s family said they tried all the chemos and were never able to get his cancer under control. That’s when they began looking for a donor. Months later, they found Edwards.

"Hayden went through eight full-body radiations in four days.  On the fifth day, Edwards’ bone marrow was airlifted and brought directly to Hayden. It was touch and go for several days. We prayed every day for Hayden and Ellis not even knowing a name,” said Hayden’s grandmother Teresa Monday.

“That was all they had been waiting for and that meant so much for them on that day,” said Edwards. “My part of it really is super small. Though it sounds like the cool heroic part, it’s really small.”

Two years later, Hayden is in remission.

Edwards said he hopes his story will encourage others to sign up for “Be The Match.”

“I think anyone who can give blood could just as easily be in the marrow database. If I weren’t in the database, he would’ve had a lower percentage match,” said Edwards. “If you could just have everyone in the database then all of your best matches are able to happen. I just want everyone to know how easy it really is. It’s not scary at all.”

As for Kajal, the sixth-grader who inspired the whole event, she received a bone marrow transplant in January 2013. The transplant was successful, but one month later, Kajal passed away from medical complications.

Her mother said hearing these stories keeps Kajal’s memory alive.

"My angel Kajal is not only looking over this family but will be with many more families as her legacy continues. Her legacy also continues with the children, and their service and leadership work inspired by helping Kajal,” said Tina Patel.

At Athens Academy, the “Be A Hero for Kajal Service and Leadership Initiative” is now a school-wide program that involves service and leadership initiatives every month. This week the program leader said he was contacted about another possible match.

“The students may never know how many lives they touched and will continue to touch,” said Brian Olson.

The students will be holding another drive on Sept. 10 at UGA in hopes of finding a match for a 5-year-old named Lake.

To sign up for “Be The Match” and become a part of the national bone marrow registry, click here. The process only takes a few minutes. The organization will then send a kit to your home that includes a cheek swab. Once you return the kit, you will be a part of the registry.

To see other stories like Edwards’ and Hayden’s visit the “stories” section of “Be The Match.”

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