A Rae f Hope

The story of Alex

Being the only patient in America with my (as of now) nameless and extremely rare disease, I can only hope that one day they name it after me!

In October of 2012, I was no longer the typical 14-year-old girl, I was a girl whose entire life was altered because of a terminal, rare, un-diagnosable illness that attacked my nervous system. I went from having the subconscious ability of walking across campus, to being exhausted by the time took 10 steps to the bathroom, because my legs shook uncontrollable whenever I stood or walked. Every doctor who examined my tremors were perplexed, never had they seen tremors in which the muscles had full strength and function, and subsided when sitting or laying down.

I then started having trouble digesting food and began vomiting everything I ate, including water. I was consistently in and out of the hospital for 18 months, adapting to life as a disabled patient. I spent most of my sophomore year in a wheelchair because my tremors prohibited me from being dependent and instead of enjoying the holiday where you eat until you can no longer breathe, I had a NJ nasal feeding tube implanted. My tube ran through my nose into my small intestine and hooked up to a pump to manually feed me for survival.

By the 5th month with the tube, my body was no longer accepting the feeds and my liver and heart were beginning to fail. I underwent every single medical test possible to find out what was wrong with me, but no doctor could find an answer.

February of 2014, I was told I would “most likely never recover” and I was “a very rare case, the only one in America with my condition.” My family and friends were faced with the harsh reality that they could lose me.

In hopes of restoring function of my organs, I was scheduled to get a permanent feeding tube surgically implanted into my small intestine. I would be 16 years old and never enjoy a peanut butter and jelly sandwich again or wear a beautiful prom dress because there would be a hole cut in it for my tube.

Miraculously, the day before surgery, my gastro doctor called my mom and said she had conferred with specialists around the US and there was one experimental treatment they could try. My surgery was canceled and I endured 3 weeks of intensive inpatient treatment that had never been practiced on any patient at Rady Children’s San Diego. I worked with numerous specialists, retrained my body how to eat, and even though it took me 2 hours to eat a meal, I slowly worked my way from a cup of water to a peanut butter and jelly sandwich.

March 19th marks 2 years since I began my life as a survivor of this rare disease. Now it is my goal to support the critically ill children that are fighting for their lives, as I speak on behalf on current patients, survivors and those who have passed, in appreciation for the doctors that strive to save lives and enrich the futures of our youth.