Noah Johnson Noah’s TSC Journey

First post: Dec 5, 2019 Latest post: May 17, 2021

Thanks for taking the time to visit Noah’s site! This site was setup for Noah’s family and friends to keep updated on his medical progress. We will give everything, but up in the fight to help our son in his battle against Tuberous Sclerosis Complex (TSC).


A little history on Noah - When Rachel was 34 weeks pregnant with Noah, an ultrasound showed multiple tumors on Noah’s heart. This led to a diagnosis of TSC shortly after birth. Noah has multiple organs with Tubers and Tumors. Currently, the most concerning tubers/tumors are found in his brain. Most of his current health concerns are coming from the brain. He is currently enrolled in the PREVeNT trial, which is focused at stopping Infantile Spasms (IS) prior to them starting. IS is a very dangerous type of epilepsy that occurs in infants. Infants with TSC are at a higher risk of IS than the general population and the epilepsy community with 35% of TSC infants having IS.


If you would like more information about TSC you can visit the TS Alliance website, which is such a wealth of knowledge on the subject. https://www.tsalliance.org/


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