When Keira was born with TSC, the meaning of life for her mother, Sunny, was forever changed. Sunny is blind due to retinitis pigmentosa.
Sunny had to learn how to live again – not just for herself but for her baby as she realized it was “no longer about me and how I felt because Keira needed me more, and our journey and bond began before she took her first breath.”

Sunny suggests getting to know your child first because learning to live with TSC comes with time. Keira came with a desire to fight for her life, and she has fought every step of the way. Keira’s life is precious to her, so her family works to help her honor it. They have had to overcome many hurdles and are most grateful for the many caring hearts and helping hands of families just like them who are learning together how to live with TSC.

Keira is as willful as her mom, and both are both challenged beyond belief and still refuse to give up. Sunny says, “There is so much hope to be had. As Keira’s mother living through her eyes has taught me that all life deserves a chance. A person does not have to see to have insight. You do not have to be physically strong to have strength. However, surviving it takes a village and you have to know where and when to get help. In your loneliness, you are not alone. Fill your heart with hope and then open your eyes. You will see light and then when you are ready to listen reach out and lean on us. The TSC Alliance will guide you every step of the way.”

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