Lydia started having seizures soon after birth. After 3 weeks in the hospital, we discovered a spontaneous mutation in a critical gene called KCNQ2 that controls brain function. She will be severely mentally and physically disabled. She will never sit-up, crawl, walk or talk. We are devastated and heartbroken, but we now understand that we can still change her trajectory.
Lydia’s diagnosis was very early; her brain is still plastic. There is a technology called Antisense Oligonucleotide (ASO) that is extremely effective to silence these mutations at the source. We can customize an ASO for Lydia within months.
Lydia is not alone. There are millions of children beyond her that can benefit from rapidly customized ASOs. We have set up Lydian Accelerator to help accelerate this platform. Read more.
WE NEED YOUR HELP NOW
We are fortunate to be part of an incredibly accomplished tech community. Help us save our daughter and pave this way forward for millions of others. Donations are tax deductible.
Rohan Seth and Jen Fernquist Seth grew up in India and Canada respectively. We both studied Computer Science and met while working at Google.
Lydia is our first child. She has beautiful chubby cheeks, long eyelashes and the sweetest smile. She is missing milestones. Her days are filled with pain and discomfort, her weeks are filled with tests and physical therapies. We are living every parent’s worst nightmare.
We know our journey won’t be easy, but we are scientific, hard working and ambitious. Over the past few months, we have translated foreign medical records to find a diagnosis, self compounded drugs at home, dived deep into the science to identify a cure and now put together a phenomenal team of scientists to rapidly execute on it.
We have setup a registered 501(c)(3) non-profit Lydian Accelerator and our mission is to accelerate customized genetic treatments for Lydia and others like her. Read more.
Lydian Accelerator is a registered 501(c)(3) non-profit (83-4634227). Donations are tax deductible.