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Survivor Story: Mason Fries

Posted by Pete Visintin on

 

Written & Contributed by Stephanie Stahlhut

 

In the blink of an eye everything can change.  How you look at life, your goals for the future all can be changed by one event.  This event for my family was at the beginning of May when my nephew Mason was diagnosed with a rare genetic disorder called Adreno-Luekodystrophy (ALD).  

 

This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons.  It mostly affects males and the most devastating form occurs in children between the ages of 4 and 10 years old.

 

Mason is 8 years old and just finished the 2nd grade.  He had been having issues at school, and the psychologist suggested that he be seen by a neurologist.  

 

An EEG showed that Mason's brain was slower than what it should be for an 8 year old boy.  They ordered an MRI that showed possible ALD and shortly after that a blood test confirmed the diagnosis.  Mason was then sent to the University of Minnesota Journey Clinic.

 

Currently, the only treatment for ALD is a Bone Marrow Transplant and that is only if the disease is caught soon enough.  Mason and his parents spent several days in Minnesota at the Journey Clinic and luckily the doctors believe that Mason is a candidate for the BMT.  Right now we are waiting to see if Mason's little sister Elissa will be a match otherwise they will have to search the registry to find a donor.

 

This is a high risk procedure and Mason will have to stay in Minnesota for at least 4 months.  This is going to be a very long and costly journey for my family.  Mason's parents, Tina and Colin, are doing everything in their power to help Mason, but they need your support!

 

-Stephanie

 

More than 50% of the proceeds from all Fight the Fight purchases made from August 1st, 2016 to August 15th, 2016 will be donated to Mason's family to help cover the cost of their mounting medical  related expenses.

 

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