My amazing husband, Chad, discovered he was critically ill at age 46 when he became unusually short of breath during a hike. Although we had known for years that Chad's liver was slowly deteriorating for unclear reasons, his liver symptoms were minimal. He continued to live a healthy life, biking to work and traveling the world, as we remained hopeful about a future liver transplant. That hope shifted when Chad was diagnosed with myelodysplastic syndrome (MDS) in addition to liver cirrhosis. Critically short telomeres were later identified as the likely cause of both conditions.
We moved quickly to save Chad's life, traveling to a hospital overseas where I was able to donate part of my liver to him, then returning to the U.S. for a bone marrow transplant. The bone marrow transplant failed to engraft, and Chad's disease officially progressed from MDS to acute myeloid leukemia (AML).
Chad passed away in 2019 at 47. Months of chemotherapy for his blood cancer, followed by a complicated liver transplant, proved to be too much for someone who just wanted to live to enjoy his family and two young children.
At Chad's Celebration of Life, the same themes echoed again and again: love, kindness, intelligence, and authenticity. Chad wished to be remembered as “smart and nice,” and those of us who loved him continue to honor him by striving to live that way ourselves.
Telomere biology disorders are genetic diseases that frequently manifest as bone marrow failure and leukemia, and, as in Chad's case, often go undiagnosed for years. Today, I serve on Team Telomere's Board of Directors, working to create greater awareness of this terrible disease and better tomorrows for those affected by it.
Heidi
Family member, caregiver, advocate
