My Daily Battle with My Daughter’s Health, and Why I Invest in Life

Salvatore Picciallo |

My 11:30 cancelled and I decided to work from home today and eventually get outside and start to clean up the backyard for this summer.  I worked all morning handling client issues and applications during a very volatile day for the markets.  While Mia was on a break during her daily 5 hours of therapy sessions, she was relaxing with one of her nurses, Lisette on the living room floor.  The grind is easier when I’m at the office.  I can’t dwell on Mia and how her day is going.  How many seizures has she had today?  That I find out by text.  Unless I’m home, and then it’s a part of the day.  It’s horrible, but we’re used to it.  We calm her as quickly as possible and continue our routines as best we can.

After power washing and cleaning the outdoor kitchen, I found myself back at the kitchen table back to work.  I just received an email from Clinical Connection which I subscribed to years ago in hopes of finding a clinical trial for Mia that may reduce her seizures, heal her brain, or give her any cognitive gains that I wasn’t able to facilitate on my own.  “Dear Salvatore, We are glad to inform you that a new clinical trial for Pediatric Epilepsy (Ages 4 to 12) is now available near you. Click Here For More Information.”

I read the details of the Steamboat Study and the investigational medication, called NBI-827104.  The study is evaluating if the investigational medication is safe and if it improves brain activity caused by epilepsy while sleeping.  

As I got this far into the details I heard and felt the pulse from the living room.  Lisette called out to me, “Sal, Mia’s having a seizure.”  I don’t even get worked up anymore.  I’m numb to it.  I know it will last for 10-45 seconds on average.  She will typically snap out of it and hopefully I can get her to smile within a few minutes if it’s wasn’t a bad one.

My wife and I rushed to the living room to help Mia recover from her 3rd or 4th seizure of the day. Thank God she bounced back from this one quickly and continued her day.  I went back to my computer and continued to read what felt like the millionth research study that may or may not pertain to Mia’s condition and what we’re dealing with.  Just another medical research article or clinical trial that a Private Wealth Advisor had no business reading and could barely comprehend the medical terminology.  As I’ve told friends and family the past 5 years; I’ve gotten my fake PhD at 3am most nights from my iPhone in bed or in a recliner in various clinics and hospitals. 

So here I am reading an email seeing how we may qualify for a clinical trial for an experimental medication from a company called Neurocrine Biosciences.  So I immediately filled out the questionnaire  and waited for the response from the Cleveland Clinic about our eligibility.  But in the meantime, my MetaParadigm way of thinking also kicks in.  Is Neurocrine Biosciences publicly traded?  Are they a viable company at the forefront of solving Mia’s condition?  Maybe, maybe not.  Time to do some homework.  It may be a company I add to my portfolio in a measured way as a hedge on the future of epilepsy research.  I will not stop searching for answers.  I will try almost anything to save my child both in critical situations and in everyday life.  If that means we board a plane to Panama for a world class Stem Cell Treatment or add a microdose of some **** supplement to her daily regimen or we head up to the attic to sit in our hyperbaric oxygen chamber for a hour a day or I research and invest in a diversified portfolio of companies and sectors positioned to create a paradigm shift in medicine that will bring my Mia back to me; then that’s what I will do.  

I will Invest in Life.


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