Parker Ignited our Purpose.

It takes five years on average for people to be diagnosed with a rare disease. 

This was true for our son, Parker. 

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Discover.

Parker’s lack of growth and eventual diagnosis of Growth Hormone Deficiency at 22 months was only a symptom of a much more complex medical condition that was diagnosed over three years later.

It was the first of many puzzle pieces, like his developmental delays, etc. that were slowly fitting together until the picture became clear. 

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Identify.

Putting that puzzle together took many specialists, many tears, and a lot of persistence advocating for our son to find the answer to our question. 

What was the underlying issue causing all of these problems in his little body?

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Diagnosis.

After five years, we got our answer. He was diagnosed with an extremely rare genetic disorder called Weidemann-Steiner Syndrome. This little gene is the light switch affecting various parts of his body.

 
 
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Now what?

What resources are out there to help our son live a full, independent life?