In January 2012, Jenn and Troy noticed a change in their 9-year-old son, Henry. “All of a sudden, Henry was acting out of the ordinary,” says Jenn, “He was displaying symptoms of ADHD, and walking strangely, and he just wasn’t himself.”
Months later, after many doctors’ appointments and tests, Henry was diagnosed with adrenoleukodystrophy (ALD), a rare and often fatal genetic disorder that causes rapid deterioration of the brain. “I remember the doctor saying ‘we expect a very poor outcome,’ says Troy. “We asked about hope for the future, and learned there wasn’t much.”
Just over a week after doctors told the family Henry was not a viable candidate for a marrow transplant to cure his ALD, the family received a heartbreaking call. Their younger son, Eli, had the same deadly disorder. Thankfully, though, Eli had hope for a cure. Because of his early diagnosis, he was eligible for a marrow transplant.
Jenn and Troy did not delay. Time was their enemy because of the aggressive disease’s pace of destruction. Quickly, Eli’s doctors located a 5 out of 6 cord blood match and the family made plans for Eli’s transplant.
Over the coming months, Jenn and Troy became heroic parents. One night would be spent at home appreciating their final precious moments with Henry. The next night would be spent in the hospital helping Eli fight for his life.
After several rounds of chemotherapy to prepare his body for transplant, Eli received his second chance at life. “His match was such a gift,” says Jenn, “I felt like ‘gosh, finally something went right. Something is perfect.”
“The day Eli came home from the hospital, he walked into the house and Henry, who at that point was barely talking, walked up to Eli with his arms outstretched. He hugged his younger brother and said ‘My Eli’s home!’ And all of a sudden we felt a sense of wholeness again,” says Jenn.
That image perfectly captures Henry and Eli’s relationship. The brothers were best friends, “they did everything together,” says Jenn.
Two weeks before Henry passed away, he rapidly lost the ability to move. Jenn and Troy carried their precious boy into the living room, and set up a comfortable place for him to live out his final days. “That whole time,” says Jenn, “Eli sat beside Henry. He never left. It was like Eli was standing guard.”
Today, Eli understands that had his older brother not been diagnosed with ALD, he likely would not be alive. “Eli is very clear about what happened. He knows he is able to be alive because Henry is not,” says Jenn. And for that, Eli is forever grateful to his big brother.
While Henry has left this world, he is still very much present in the lives of Eli, Jenn, Troy and the hundreds of others that loved him and were touched by his sweet, playful smile. “No matter what,” says Jenn, “We take Henry with us. He’s always with us. He’s changed the people we are in tons of ways and we were so lucky to have had him in our lives.”
There is no better way to show your support than by making a gift to Be The Match. This holiday season; give the greatest gift of all –the gift of life!