Stiff Person Syndrome: If You're Not Dancing, Something's Wrong

$20,675
8%
Raised toward our $250,000 Goal
15 Donors
100
days left
Project ends on September 30, at 12:00 AM EDT
Project Owners

Support Johns Hopkins Stiff Person Syndrome Center and Dr. Scott Newsome

My name is Lea Jabre Fayad, and I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome. Earlier this year, I came out of the Intensive Care Unit ALIVE - that word has never had such an impact in my life.

On the eve before the 12th of February, feeling weak I told my husband not to worry if I took time to call him post treatment. My mum asked me if I needed her to drop me, but I asked her to pick me up instead because I told her I did not feel ok.

It’s like I knew… 

Post treatment, my blood pressure went so low that I passed out and after various attempts to wake me up I was taken to the ER and a few hours later to the ICU. I was soon diagnosed with Septic Shock due to four different bacteria in my blood. In twenty-four hours my condition became critical, and my dad asked my husband to travel immediately back to Beirut from Africa.

From these eighteen days, my memories are the ones that my subconscious created as I was delirious, in and out of consciousness. I dreamt of life, and how much I loved it, of music and dancing. I heard my parents and husband’s voices and gentle words of love without being able to respond. Their love and my strength woke me up and I was alive again and able to communicate.

I love life, my body and its strength is undeniable despite all of my sicknesses. 

I am thirty-seven years old and neither Stiff Person Syndrome nor its treatments will defeat me.

Whatever defines you hold on to it, do the things you love, live life because it is truly beautiful, live every day and appreciate it. Life, you brought me back I will not disappoint you.

It is because of this that I am serving as a patient advocate and raising funds for the Johns Hopkins Stiff Person Syndrome Center, led by Dr. Scott Newsome. I'm doing this for me. I'm doing this for those who will follow me. I'm doing this to provide Dr. Newsome and Johns Hopkins the tools to develop targeted treatments for SPS and give people hope for the future.

Will you join me?

I invite you to make your tax-deductible gift securely through this online portal, or contact Kaylin Kopcho, Director of Principal Gifts - Neurology, for assistance with other philanthropic vehicles (donor advised fund, gift of securities, etc...) or to learn more.  Kaylin can be reached via email at kaylin.kopcho@jhmi.edu or phone at (443) 287-7871.  Thank you for your consideration, I am grateful.

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