Help Shelly with a life-saving surgery in NYC

Shelly and I have known each other for over twenty years. I cherish our friendship and she is one of my dearest friends. Shelly has such a big heart and is the first person to lend a hand or an ear when her people are in need. She is also one of the strongest individuals I’ve ever known.

The urgency of this surgery is likely a surprise to some of you, as she manages to resolutely conceal the extreme pain that her condition afflicts upon her daily. I will be accompanying her to NYC for the procedure and will help with the travel, accommodations, and aftercare. Even the smallest contributions to make this difficult journey a little easier will be greatly appreciated.

Shelly's story, in her words

We can’t always choose our battles, but we can choose how we respond to them and fight them. I choose to respond in bravery, strength, and to make meaning out of what is heavy.

For the past six years, I have been fighting a battle with a rare structural neurological disorder called syringobulbia/syringomyelia: a battle that is invisible to nearly everyone but myself.

This disorder is causing the cerebrospinal fluid in my brain and spinal cord to not flow properly, creating a buildup of fluid that is stretching my spinal cord like an overfilled water balloon.

Recently, my condition has spontaneously worsened and the fluid is now pushing up against my medulla and brainstem, affecting my autonomic nervous system (e.g. heartbeat and breathing).

If untreated, this condition can cause sudden complete paralysis or death.

In the past six years, I have had three brain/spinal cord surgeries that have attempted to open the space between my brain and spinal cord to allow the cerebrospinal fluid to flow properly, but none have been effective yet.

On April 4, I’ll be undergoing a major surgery at New York Presbyterian Hospital. This hospital has one of the top neurological programs in the world and specializes in my condition.

During the procedure, a permanent stent will be inserted in the fourth ventricle of my brain to help the spinal fluid flow freely and alleviate the pressure on my brainstem and spinal cord. This procedure will be different than the other surgeries I’ve had up to this point.

After the surgery, I’ll stay in NYC for two weeks until I’m stable enough to fly back home to Austin, TX, where I’ll move through another two or three months of recovery and physical/occupational therapy.

The financial burden of medical expenses, the travel to and stay in NYC for myself and Tarra, and other related costs is an additional stress on top of an already highly taxing situation, so I am calling in support. Anything helps.

More information about syringomyelia and syringobulbia can be found at the National Organization for Rare Diseases.