Lili’s CTR Journey, told by her mom, Lori
Transcript

Timestamps are approximate. Bracketed descriptions are not spoken dialogue.

[00:00] We went from one specialist to another, thinking it was a genetic disease, and then a benign tumor, and then a rare venous malformation. So we decided to get a second opinion.

[00:10] Having lost almost all her vision in one eye, and with the fear of losing sight in both eyes, we felt like time was not on our side.

[00:18] We never imagined she would be a medical mystery at a world-renowned hospital. We never thought it would take months to diagnose the rare lesion in her brain.

[00:27] I spent sleepless nights doing research on Google and joined 15 different brain tumor support groups on Facebook trying to diagnose my own child and wondered what other parents do who don't have the kind of resources I have available.

[00:40] Despite our extensive knowledge in navigating diabetes and coming from a family of doctors,

[00:45] We still had many missteps in our journey.

[00:48] I reached out to everyone I knew, and through the miracle of social media in a group of 300,000 parents,

[00:54] Missy Calero read about our journey and knew that Candy at CTR could help us find the answers.

[01:06] It took an exploratory surgery multiple MRIs three second opinions and a Facebook post until

[01:13] I connected with Missy and she messaged me that Candy found a doctor who said I think I know what

[01:19] This is and to be honest I thought it was too good to be true we felt truly blessed to find Candy

[01:26] The advocate we needed to navigate this healthcare maze in finding a diagnosis and treatment.

[01:32] With Candy's help, ultimately getting eight second opinions, and finally a consensus on Lili's rare diagnosis,

[01:40] The fear and anxiety that comes with deciding on the best treatment option was our next hurdle,

[01:46] And Candy guided us through that process as well.

[01:49] Now we have a plan.

[01:52] We were frustrated and in a three-month wait-and-see holding pattern that left us feeling anxious and unsettled until we met Candy, the patient advocate we didn't know we needed, and she made all the difference.

[02:08] She immediately opened doors and connected us with the doctors at lightning speed.

[02:15] We would not have been able to find the right diagnosis and the right physician without CTR.

[02:23] We are forever grateful to Missy, Candy, and CTR.

[02:28] And we know... [The source video ends mid-sentence.]