There was nothing she could do to save her brother. But could she help this little boy?
- Posted on Aug 1, 2014
It was strange being back at the Ronald McDonald House in Minnesota. For months my family had lived here while my nine-year-old brother, Evan, battled adrenoleukodystrophy, a condition that affected the adrenal glands and white matter of the brain.
After Evan died we went home to California. Now, months later, my mom and I had returned to Minnesota to thank the hospital staff for all they’d done. Losing Evan still hurt so much. I’d hoped this trip would help me heal.
The doctors and nurses weren’t the only ones I wanted to see during our visit. “Hi, Kelly!” I said to one of the residents from the Ronald McDonald House as I walked into the dialysis unit at the hospital. In the crib beside her was her two-year-old son who was a patient.
Dominik’s bright brown eyes were the same as ever. Unfortunately, so was his condition. Dominik was born with failing kidneys. Every day a dialysis machine filtered the impurities from his body. Kelly had donated one of her kidneys, but her son’s body rejected the transplant.
Dominik blinked sleepily at us from the crib. He was tired from the dialysis.
We sat down to catch up. “Any luck finding a donor?” Mom asked Kelly.
She shook her head. Dominik’s sister and brother were too young to donate, and Dominik’s dad had been tested, but he wasn’t a match. “All we can do is wait for an anonymous donor,” Kelly said.
Waiting. My family knew too much about that. I was in my sophomore year of college at USC when my dad called to say Evan had had a seizure at swim practice and was rushed to the hospital. We’d come out to Minnesota so Evan could get a bone marrow transplant. Doctors said that might keep him alive.
I wasn’t a match for Evan and neither were my parents or siblings. We were utterly helpless while the clock ticked against the child we loved so dearly.
Dominik sat quietly in his crib as we talked. I remembered the first time I’d seen him. It was in the kitchen at the Ronald McDonald House. Mom and I took turns cooking dinner and spending the night with Evan in his room at the hospital.
That particular night was my turn to cook. I was standing at the stove when this little curly-haired boy toddled through the kitchen and down the hall to the playroom. I was so focused on Evan I barely noticed the other families in the house. But something about Dominik made me smile.
Evan got his transplant, but died a few months later from complications. I went back to USC, with Evan never far from my thoughts. And then Dominik was featured on a TV show.
Evan never got better, I thought. Dominik might not either. There was nothing I could do for Evan now, but Dominik was still fighting for his life. When the show was over I e-mailed Kelly. “Maybe I should get tested to see if I can be a donor,” I typed. “I know it sounds weird, but I feel like I could be a match.”
“Mary, you need to think about yourself right now,” she e-mailed back.
Kelly was right. I switched off the computer. I needed to deal with my feelings over losing Evan. Besides, how did I think I could be a match for a little boy I didn’t know? The odds were against it. Still the feeling continued to niggle at me every time I checked Kelly’s web page for updates on Dominik’s condition.
Now, with Dominik sitting right before my eyes, the feeling was even stronger. I would have done anything to save my little brother, but there was nothing I could do. Not for Evan. But what about Dominik? How wonderful it would be to keep his family from experiencing the loss my family suffered.
I’d felt helpless for so long. Dear God, I wondered, is this an opportunity to stop that awful empty feeling?
That night I told my mom I wanted to be tested as a donor for Dominik. After his one failed transplant there was only a three percent chance that anyone else would be compatible because new antibodies were created when his body rejected his mother’s organ.
“When I look at Dominik I think about Evan, how he was so hopeful right up until the end. His transplant donor was a big part of that. I think Evan would want me to try. I feel like God would want me to try too.”
Mom understood. In fact, she felt the same way. Before going back home to California we both got tested. We knew it was a long shot. We had nothing to lose.
A week later I was sitting in class listening to a lecture when my cell phone buzzed. The display showed I’d missed a call from the Minnesota area code. A second later a text came in from Mom: “OMG. The transplant center called. Check your voice mail.”
I called the center as soon as I got out of class. “You are one hundred percent compatible,” the transplant coordinator said. “You couldn’t be closer if you were Dominik’s sibling or even his identical twin.”
Although I knew I wanted to be a kidney donor, I didn’t know what the process entailed. I found out over the next few weeks. I took a lot of tests: X rays, an EKG, a CT scan. More importantly the doctors required a psychiatric evaluation.
“We need to be sure you won’t blame yourself if the transplant doesn’t work,” the psychiatrist explained when I met with her. “Especially since you’ve just lost your brother.”
I knew I might not be able to save Dominik. I just wanted to try.
Finally the doctors approved me for a transplant. They’d notified Kelly there was a potential donor. “The person is still unknown to us,” she wrote on her web page. “We can’t be sure until it’s official.” It was time to give her the news.
I bought a scrapbook at the campus bookstore. In it I pasted copies of my test results, e-mails of Kelly and me discussing Dominik’s search for a kidney, and Kelly’s updates about the mysterious donor.
I also included the torn page from my school notebook where I’d jotted down the message from the transplant center. Then I sent the whole package to Kelly.
A few days later, exactly a year since Dad called with the bad news about Evan, I sat at my computer to watch Kelly on the webcam as she opened the scrapbook for the first time.
She flipped through the pages, not understanding what it all meant. Not until she got to the last page, where I wrote in big letters: I AM THE DONOR.
“Mary!” Kelly yelled. Then she started to cry. “I can’t believe it!”
She brought the computer to the hospital where Dominik was having his dialysis. “Who will give you a kidney?” his father said on the webcam.
“Mary!” Dominik shouted.
“And where’s that new kidney going to go when you get it?” asked Kelly.
Dominik pulled up his shirt and pointed to himself. “In my belly!”
Three weeks later Dominik had a new kidney. This time his body didn’t reject it. The doctors called it a perfect fit. And me? Naturally, I still miss my brother and I always will, but I’ve gone from feeling helpless to healed.
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