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Tylers Trip for Life: Our 1st Step

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Our journey is just beginning...

July 9th, at exactly 2:58pm, our lives drastically changed. We received a call that gave us the most devastating news any parent could hear. My child has a terminal illness. My beautiful boy Tyler was diagnosed with a disease called Sanfilippo Syndrome.  It's a terminal disease where toxic storage will clog his brain and take away all his abilities. It's often likened to a fatal 'Childhood Alzheimer's', but it's even worse.  Right now, there's no available treatment or cure.  

I heard the words "terminal" from my doctor and my world stopped, my heart stopped, my ears rang, and tears automatically poured down my face like a river. It didn’t stop for a long, long time. While the tears continue to come, I've been able to think clearly now and I'm starting to plan for the fight for Tyler's Life. I have made a promise that I will start doing every thing possible to help find a cure. 

I know exactly what the first step is.  I found out there is a major International Sanfilippo (MPS III) and MPS Conference with many sessions focusing specifcally on his disease.  It's happening in San Diego, California and its coming up quick on August 2-4.  There will be all of the major research companies from around the world attending, as well as other doctors, scientists, Sanfilippo Foundations, and other families just like mine. We have to be there.  We have to take this first step and meet these people to learn everything we possibly can.  We are jumping to action quickly because with this disease, time is of the essence. I personally cannot sit by and not be a part of finding the answer. After the conference, we are going to dive into fighting for research for a cure with the Cure Sanfilippo Foundation (they will also be at this conference!).  But first... 

I am asking for your help to take this very important first step to get to the conference!  This is not something that is easy for me to do because I was always taught how important being independent and making it on your own is. I never thought, however, I would be faced with something like this.  I will do things out of my norm to do whatever it takes for my son. Help us take this first step, help us get to this conference and learn the information, to ask questions until we just cannot think of another single possible question to ask, to make vital connections, and meet the people who we hope will save Tyler.  

My deepest gratitude for reading this and for helping support and share. We only have a few days to raise this money, but we believe.  Thank you for helping us take this First Step!
Jessi (Tyler's Mom)
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Donations 

  • Roger Houghton
    • $50
    • 7 yrs
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Organizer

Jessi Wintringham
Organizer
Roanoke, VA

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