Christian’s mother found out about tuberous sclerosis complex two days before he was born. She had never heard of TSC and had no idea how their lives were going to change. Fast forward: Christian is now 20 years old. Through years of doctor’s appointments, three brain surgeries, tests, medications and therapy, his family could not imagine life without him. “It has been a wild ride for sure as those reading this can appreciate from experience. He has shown us how to love unconditionally and see life so much differently.”

Christian is verbal and can have his needs met to a degree. He loves music and dancing, and does not cease to amaze his family every day, because it is the little things that count! Christian is still in therapy until he turns 21 and will be attending a day habilitation when he ages out of public school. Christian has three younger triplet siblings who he loves, and they love him.

“What gives us hope is just seeing firsthand from the time he was born and looking up and contacting the TSC Alliance that there are people and an organization out there ready to help! For all the newbies who feel lost and have nowhere to turn, the TSC Alliance will surely assist and get families connected to the right places, whether that be a TSC clinic or other families to connect with. The treatment for TSC has come a long way in 20 years, which is very promising for the future!”

Thank you to our TSC Navigator supporters:

Northstar Sponsors

  • Jazz Pharmaceuticals 
  • UCB, Inspired by patients. Driven by science.

Cardinal Sponsors

  • Neurelis
  • Nobel Pharma

Directional Sponsor

  • Noema