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There was nothing she could do to save her brother. So why did she think she could help this little boy?
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.
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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.
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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.