Help us accelerate the cure for cavernous malformation!

Our Story

Elan, was diagnosed with cavernous malformations at the age of 4; I can still remember every detail. The boys were playing on the floor in my room. I announced, “Time to get ready for bed!” Soon after, Elan began crying in pain on the floor. As a mom, you start to learn the different kinds of cries your child makes and what they mean. This was a cry I’d never heard before and something I can never un-hear. I lifted my Elan up off the floor because he was unable to walk and that was the moment our journey began.

Once we arrived at the hospital, the entire family in tow, we began frantically trying to figure out what to do next. The hospital staff greeted us and from that point everything moved pretty quickly considering. All the tests were ordered, medicine was distributed and he was carted off for his CT scan. When the doctors arrived to pull up his scans, I noticed a large black cluster that didn’t belong. My heart sank and fear set in, but I kept a straight face and tried to listen to the doctor’s words. Cavernous Malformation, Tumor, cerebellum, surgery….he’s being admitted to the ICU. What?! The next day, as I hugged Elan in the surgical waiting room. The anesthesiologist had to pry his hands from me as they took him back, screaming “Mommy”, and reaching his arms towards me as they took him down the hall. I felt helpless, terrified, and heartbroken.

After his surgery, I remember the frustrated tears of him being unable to pick up his cheerio with his hand or not being able to paint this wooden snake they brought in for him. This is also where “The Lego Batman Movie” made its debut in our household and was on repeat for the five days we were in the hospital.

Alliance to Cure Cavernous Malformation is the only organization that supports patients with this illness. The day my son was diagnosed is the day our life changed forever. The Alliance was there when we needed support and they continue to provide support on a personal level to each family affected. No family should go have to go through this.

They represent hope for a better future for Elan and I will continue to support their efforts until the job is done. Donations like yours are the lifeblood of the journey towards a cure. Join the fight for our family, and become part of the cure!