유전학자 이수경님과 딸 유나 이야기

영어 비디오

뉴욕타임즈 비디오 (Her Daughter’s Diagnosis Made Her Work as a Scientist Personal)

영어 기사

뉴욕타임즈 기사: Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies

한글 기사

연구하던 유전자 돌연변이에 딸 희귀병 앓아

영어 기사가 제일 디테일합니다.

우연히 접한 기사인데 너무 마음이 아프더라구요. 자기가 연구하던 희귀한 유전자 돌연변이를 딸한테서 보는 기분은 어떨지... 상상도 안 가네요. 더욱 절실할거 같아요. 기사를 너무 잘 썼고, 이야기가 너무 특별해서 공유합니다.

이수경님이 뉴욕타임즈 기사에 올린 댓글:

"Reading this beautifully written article brought me so much emotion, and I could not sleep last night thinking about Yuna and the kindness that people showed to Yuna and our family. I would like to thank Pam Belluck and Ruth Fremson for being wonderful and sympathetic listeners and for producing this fantastic piece. I felt comforted and understood while I was telling them Yuna's story and - for the first time to this extent - my struggles being a mother of a child with special needs and balancing motherhood with my career as a scientist. I am also very grateful to the FOXG1 research foundation and National Institute of Neurological Disorders and Stroke at NIH, which have been giving us generous support to our research on the FOXG1 syndrome. 

https://www.foxg1research.org/news/2017/11/22/foxg1-research-funds-secon...
https://projectreporter.nih.gov/project_info_description.cfm?aid=9401898...

I can't thank enough to friends, colleagues, and everyone who wrote kind wishes and cheering messages here and to me. Your support means a lot to us."

"When I was a postdoctoral fellow at the Salk Institue many years ago, I published the article describing how motor neurons inside the spinal cord are made during fetal development. It was basic science research with little applied scientific component, but the first email that I received as soon as my paper became public was from a father of a child with debilitating motor neuron disease. He asked me if my research could provide any clues or solutions to his son's condition. Although I could not give him any satisfying answer at the time, the agony, love, and commitment in his message deeply resonated with me and inspired me to think of science from the viewpoint of parents who are looking for answers to their children's health issues. A decade later when we learned about Yuna's condition, I was reminded of his message, and I felt lucky and privileged to be able to use my skills as a scientist to help Yuna and children with her conditions. As Yuna grows, I learned to love Yuna as she is, not who she might have been, and to dream big dreams for Yuna, and that's what keeps me going."