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 crawl, walk or talk. We are devastated but we now understand that we can still change her trajectory.
Lydia’s diagnosis was very early; her brain is still plastic. There are genetic treatments available today called Antisense Oligonucleotides (ASO) that are extremely effective to silence these mutations at the source. We have started work on a customized ASO which will be delivered to her next year.
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.
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We have made an enormous amount of progress and are just $250k short of our goal. Help us save our daughter and pave this way forward for millions of others. Donations are tax deductible.
Our first day home after 3 weeks at the hospital
ABOUT US
Rohan Seth and Jen Fernquist Seth grew up in India and Canada respectively. We both studied Computer Science and met while working in technology in San Francisco.
Lydia is our first child. She has beautiful chubby cheeks, long eyelashes and the sweetest smile. Her future without treatment will be full of pain and discomfort.
We know our journey won’t be easy, but we are scientific, entrepreneurial, 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.
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Lydian Accelerator is a registered 501(c)(3) non-profit (83-4634227). Donations are tax deductible.