By Gabrielle Yanovitz
In 2022, Setauket mom Yiwei She welcomed her second child into the world, a baby boy named Leo. She was thrilled to have her newborn son as a pal to her older daughter Anna. However, it didn’t take long for her to realize something was gravely concerning about Leo’s development.
At two months old, Leo began to suffer from seizures that interfered with his breathing. After months of meeting with some of the country’s best children’s doctors, Leo was diagnosed with an ultra-rare and severe neurodevelopmental disease caused by a mutation in a copy of his Transportin-2, or TNPO2 gene, in which only two other cases in the world have been reported.
When Leo’s family was told little could be done to help him, Yiwei took matters into her own hands, starting the TNPO2 foundation and embarking on a journey to develop a personalized medicine for Leo, using AI platforms and customized datasets. After a year of research, Leo’s individualized treatment was developed, and he has since responded well to his medicine.
Making inspiring strides for her son, Yiwei was motivated to continue the TNPO2 foundation, working to reinvent the system for children and infants with ultra-rare diseases and aiming to achieve individualized healthcare for all. Her current initiative, Project Baby Lion, is teaming up with Stony Brook Children’s Hospital to identify rare genetic abnormalities in NICU babies and develop potential treatments for these conditions.
With her critical work thus far and her plans for the future, Yiwei was recently recognized with an official New York State Assembly Proclamation by Assemblyman Ed Flood and Senator Anthony Palumbo. She discussed her journey and the importance of having local officials involved in her mission on the Morning Wake Up Call on 88.7 WRHU.
