Heather, a 45-year-old single mother from Hartford, Connecticut, has good news! (Friends brought you Heather’s story in January). She suffered chronic illnesses and multiple hospitalizations for five years, but doctors couldn’t figure out what was wrong. Then she came to the NIH, was diagnosed with a rare blood disorder – HES – and enrolled in an experimental research study.
At last week’s checkup, Heather reported that her unstable blood numbers and life-threatening symptoms have dramatically improved. And that’s not all, she has started a new full-time job as executive director of a nonprofit program for children and families.
As Mother’s Day approaches, she reflects with her 18-year-old daughter, Olivia, on how she has coped with illness and balanced her “mom” job. “It was a challenge, especially as a single mom,” she said. “I always tried to have open communication with my kids, even when I didn’t have answers. I tried to give 120% many days when I knew I could only give 50% on other days.”
In addition, Heather says she turned to her community and network of friends for support. That determination continued at the NIH where she reached out to Friends to help pay her mortgage, so she could continue treatment when she was out-of-work. “It wasn’t a question, I had to pursue treatment,” she added.
Heather’s treatment will continue as she searches for a cure. The clinical trial at NIH determined that steroids helped improve her condition and quality of life, but long-term use is not feasible and a “second line agent” is needed. Heather will soon join a research study at Yale and continue to be monitored at the NIH.
Meanwhile, Olivia, a sophomore at George Washington University, says being with her mom for appointments gives her a chance to give back. And what does Olivia want to convey to her mom this mother’s day? “Honestly, I didn’t understand the severity of the disease. I want to say “thank you, Mom” for every single moment of normalcy in my life when your life was anything but normal.”
For Mother’s Day, please consider making a gift to Friends of Patients at the NIH in honor or memory of your mother – a gift that can save lives as we partner with patients, like Heather, in critical treatment studies. It’s a gift that supports groundbreaking medical discoveries that potentially benefit us all for years to come.
