How it works
Meet Ruby! As her name suggests, she is our little gem! Ruby is 3 1/2 years old and on her own unique little journey.
From the day Ruby was born, she has had many challenges. We spent 3 years discovering new issues/concerns and facing new challenges. Doctors were always at a loss, baffled as they helped us search for answers.
After many, many tests - we recently got a diagnosis for our little miss. It is a little bittersweet as you can imagine. We've always hoped to find answers, but as your worst fears would have it - it's not really the answer you wanted!
Ruby has been diagnosed with Zellweger Spectrum Disorder (PBD-ZSD). It's a very rare genetic disorder, with only 500 families to ever know to be affected across the world over the past 25 years, and 200 kids currently still living.
It is a spectrum syndrome meaning kids can range from Mild to Severe. Ruby is projected to be on the Moderate (middle) part of the spectrum. You can read and learn about it here (https://www.thegfpd.org/peroxisomal-disorders). I will warn you that it's tough to digest. There aren't many happy endings for these kiddos :(
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