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The Road to Philadelphia from Ohio

The Road to Philadelphia From Ohio

 

 

One of the unique blessings of receiving a diagnosis is finding your Tribe.  With a disease as rare as PURA, the longing for its name is replaced by the desire to connect with the only people on Earth that know what those four letters mean. 

 

Two years ago and again in Philadelphia, I will be blessed to meet the people that I had spent my daughter's whole life looking for. The lonely nights spent awake worrying over my motionless babe. Post after post about weird movements. Months spent waiting for inchstones that would take years. Soundless days. Seconds of blue. 

 

Through all of those times - the celebrations and good ones too - I was looking for YOU.

 

I cannot wait to meet you in Philadelphia.

Very truly yours,

Sarah

 

 

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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 .