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Learning along the journey....

June 21, 2017

Hi!   My name is Karen Bennett and I am the USA Parent Liaison. I am a single Mom of two boys, 26 and 14 years old.   My youngest son, William, was diagnosed with PURA in 2015.

 

I sometimes get asked what it's like to be a single Mom of a medically complex child.   Well, I would have to say it's tiring, educating, enlightening, exhausting, but the most important thing is... it's rewarding.  

 

William has taught me so much.  He has shown me how to treasure each and every moment and that every single accomplishment is worth celebrating.   He has taught me how to advocate for him (and me) ... and to never stop fighting for what I believe in.    

 

He has taught me how to be strong even on the days I feel so weak.    He has shown me how to go with my gut...to keep pursuing the answers...and not to take the easy road just because it's easier.   He has taught me to turn over every leaf, every rock, and see if there is an answer hidden there.   If it weren't for that, I would not be here today...planning our trip to Philadelphia to meet all of you!

 

This journey has been and continues to be amazing. Yes it's exhausting, as we all know, but worth every single step.   Keep turning over those rocks, keep looking under those leaves!   Let's keep asking those questions...big or small...so that we can get those answers that our kids so desperately need!   Keep the research moving forward...our kids are so precious to all of us…. and so, so worth it!

 

See you in Philadelphia!

 

Karen Bennett

 

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The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .