TED Community

In 2019 I became a mother. I had no idea of how impactful the experience would be for me and my husband. Our son was born with a rare disorder called Diamond Blackfan Anemia. He looks acts and develops like a normal kid but his body simply doesn't make red blood cells, technically he makes a small amount but its not enough to keep him healthy. The treatment for this is regular blood transfusions, he gets a transfusion every 3 weeks and has since birth. In order to cure him of this, he will need a bone marrow transplant. Something parents never want to hear. Upon learning this I did a lot of research to learn about his options and found that having a sibling match as his marrow donor was preferred. So I decided I to work towards finding a sibling match. As luck would have it, science has come a long way and using IVF and pre-genetic screening tests specially developed for our family enable us to test embryos to see if they might match Max. Typically 1 in 4 is a match. For the last year and half I have been going through egg retrievals and testing in hopes of getting that match. I've learned so much about the IVF process and feel like there's a lot of room for improvement. While the field has advanced, it still feels like doctors have no answers or reasons behind anything that happens. My questions are always answered with, every woman is different or we just don't know. Anyhow, after 4 egg retrievals, 14 embryos tested, we had one maybe which could have matched my son. In October we transferred that embryo, I was pregnant for a week and then it just stopped. No reasons why, just didn't work. My husband and I were devastated but we continue to push forward and will transfer another embryo knowing it won't be a match for Max. Recently we learned that donor bone marrow leads to the same long term success rates as siblings, this was new data released on his disorder. Our doctors advised us to take the IVF sibling match stress off our plates as Max has 70 matches in the donor database. 70. That's a promising number. We are still in the middle of this journey but it will undoubtedly continue to have profound impacts on the way we live, learn, care and love one another. I'm not sure where this passion will lead just yet but I am honored to be the one to guide my amazing son through it.

books, music, movies

Learning, neuroscience, music, family

I’m very passionate about my work and the people around me. I feel very lucky to work at a company that values women in the workplace, and strive to foster and grow a culture that is equal and fair. I care deeply about social-political issues, but also try not to get too wrapped up in the constant spew of “breaking news” that is so prevalent today. I try to focus my attention and time on equal and civil rights, education, gun safety, and the environment.

disruption, economic freedom for all

Slipstreaming, a way of being Human in the Age of AI