Somatus Patient Blog

A Mother's Love: A Living Kidney Donor Story

By Anne Rohall, Vice President of Government Affairs, Somatus 

On National Donor Day, I reflect on my profound and humbling journey of donating a kidney to my young daughter, while remembering and honoring patients still on transplant waiting lists, hoping to receive the ultimate gift of love – a new life. 

My identical twin daughters were born at INOVA Fairfax Hospital at only 24 weeks gestation due to a rare in utero disease that affects identical twin pregnancies – Twin to Twin Transfusion Syndrome. The babies weighed only a pound each and spent many months in the neonatal intensive care unit. My daughter was born with damage to her kidneys, as well as other medical complications such as Cerebral Palsy and seizures. 

As she grew, her chronic kidney disease (CKD) worsened. When she was in 7th grade, we learned that she was in end-stage renal disease and needed a transplant, and soon. Despite her other medical conditions, her CKD was the only condition that would eventually become life-threatening. Organ donation for her, and for all kidney patients, means no dialysis, feeling better with more energy and physical strength, doing great in school or at work, and no more fear of never getting off the transplant waitlist.

I remember reading a heartbreaking statistic that every 10 minutes, a new name is added to the national transplant waiting list. I also remember learning that the need for kidney donors far surpasses the demand for any other organ in the U.S.

 By raising awareness, we can save lives. As a mother, the decision to donate my kidney was easy – I was grateful to have the chance to save my daughter’s life. But I have met so many generous and selfless organ donors in the last four years since my daughter’s transplant who remind me of the immeasurable kindness and goodness of people. There are “altruistic” or “Good Samaritan” donors who selflessly choose to donate to a stranger on the waiting list, and there are people who choose to celebrate their own life by registering to be an organ donor after death.

Not surprisingly, I was thrilled to be given the opportunity to work at Somatus to support kidney patients and their care teams, and to encourage organ donation. Today, my daughter is thriving. My husband, her three sisters, and I are her biggest fans. We will continue to share our story of organ donation.

"We have an urgent need to fund research and innovation in kidney care, encourage organ donation, empower patients, reduce health disparities, and ensure affordable, quality care with the patient at the center. Congress and the federal agencies must continue to develop policies that encourage living organ donations and ensure that kidney patients are supported. In my role at Somatus, we’re partnering with advocacy organizations such as the National Kidney Foundation and the American Society of Nephrology to do just that. For example, we’re advocating for the passage of the Living Donor Protection Act that would prevent barriers to living organ donation such as discrimination in insurance coverage and job protection for time off of work."
Anne Rohall
VP, Government Affairs, Somatus

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