Lindsay Ramirez's Story of Her Son Elan

Elan and Lindsay in hospital bedIn December 2016, our 4-year-old son Elan had a sudden episode of dizziness and headache, and he couldn’t walk straight. After two frustrating hospital trips, Elan had a CT scan and was found to have a golf ball-sized cavernous angioma in his cerebellum. He was admitted to our children’s hospital and had brain surgery the next morning.

While we were in the waiting room during his surgery, we searched the internet, desperate for more information. Luckily, we stumbled across Angioma Alliance. The support and hope we have found here continue to keep us going.

Elan’s journey hasn’t been easy. He now has too many lesions to count, and he had a second surgery for a different cerebellar lesion in 2017. We are constantly worrying. What’s going to happen next? Is Elan going to have another bleed? Is he going to get more? We have no idea.

I have been working with Angioma Alliance since Elan’s diagnosis, first as a volunteer founding member of the Southern California Community Alliance and now as a part-time staff member, overseeing the activities of Community Alliances in the western US. I can’t think of anything more meaningful that I can do to help my family. I believe in a future with a cure for cavernous angioma, and I know that Angioma Alliance is an essential part of turning that belief into reality.

Lindsay Ramirez