Amy Grover

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A Challenge Met With Strength: Kaeden Doesn’t Let Congenital Eye Disease Take His Freedom
by Nadia Turki Kaeden is my son. He was born blind with a condition called Bilateral Peters Anomaly. He has had 39 surgical procedures on… Continue Reading
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A Diagnosis of Primary Immune Deficiency Disease: What Took So Long?
by Betty Filippelli-Gordon I fell sick at age four, the cause of which, we assumed was a leak in a sewer pipe that traveled through my… Continue Reading
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The PHight or Flight Project: How The Voice of One Pulmonary Hypertension Patient is Inspiring Others
by Serena Lawrence In October of 2013 I started to notice that I had some shortness of breath. At first, I just assumed it was seasonal… Continue Reading
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Life In Stripes Podcast: a CVID Story
My son and I both have CVID. We have low immune systems and it makes it very easy for us to get infections. We get sick a lot. It has caused… Continue Reading
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Twice Blessed? Two Rare Diseases in One Lifetime?
When I was two years old, I was diagnosed with Coats Disease, which resulted in the removal of my left eye. When I was 40, I went in to see… Continue Reading
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Hallermann Strieff Syndrome: 32 Surgeries for 14-year-old Boy
My son, Devin, is 14-years-old. Devin had his first surgery when he was just 6-months-old and we stayed in the hospital for 46 long days in… Continue Reading
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Curren’s Journey: Only the Fourth Person in the World to Be Diagnosed with HIVEP2 Syndrome
My son is two years old, and has seen twelve different doctors in his life. His weekly schedule is jammed packed with 11 hours of therapy… Continue Reading
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