In Mae’s memory, we are hosting a fundraiser for pediatric lung transplant research at Boston Children’s Hospital because we want to help Boston Children’s continue its amazing work for kids like Mae.

When we first learned at 3 months old that Mae was a candidate for a lung transplant, we did all we could to hold off on listing her. We were hopeful that Mae would grow-out of her genetic surfactant deficiency as other kids have done. We always knew that a lung transplant was a treatment not a cure. We knew that having a child lung transplant would require a strict medication regimen, and many, many doctor visits, procedures, tests and likely inpatient hospital stays .We also knew that the long-term outcomes for kids in particular was not great- 3-5 years, maybe 10 if we were lucky.

When it became clear when Mae was a year and a half that the only way we’d be able to get her off the vent and bring her home from the hospital was a lung transplant, we listed Mae and 30 days later we got the call for lungs. The lung transplant was an amazing gift. Mae was free of the tether of the vent tubing, free to use her voice, free to quickly become a playful toddler at home, soaking in everything around her with abandon.

We hoped we would be lucky. We hoped that research would catch-up in that time.  Unfortunately, that  3-5 year outcome expectation  turned out to be a year and a half, and a second lung transplant turned out to only last the same time frame. Her lungs could not keep up and her body was overwhelmed. Mae Conway Koslow-Vogel died at Boston Children’s Hospital on November 23, 2020. She was 4 ½ years old, the youngest person in the world to have had a two double lung transplants, and herself an organ donor.

We are so very grateful to have had the opportunity that the lung transplants provided us. We got to see our aMAEzing, spunky, sassy, smart, fun, playful, beautiful and mischievous girl come into her own. She filled our lives with more love and happiness than we could have ever imagined. If Mae was born in a different time in the past she would not have survived. If Mae was born in a different time in the future, perhaps science would have been able to address her underlying genetic mutation. Or perhaps her body would have been able to tolerate her new donor lungs indefinitely.

Globally, lung transplant research has been slow because there are comparatively few of them performed. Boston Children’s is hoping to help solve that problem by conducting research as a member of the International Pediatric Lung Transplantation Collaboration, an organization founded to give lung transplant researchers as much data to work with as possible. You can learn more about their latest lung transplant research here.