Amy Grover

On a Limb and a Prayer: Diagnosed with Klippel Trenaunay Syndrome
Three-year-old Akshaj sounds mature for his age. But his precocity may have come at a significant cost. Akshaj suffers from Klippel… Continue Reading
Wally Travels Worldwide for Cantú Treatment
Wally was born at 34 weeks October 16th, 2014. He was diagnosed with Syndrome Cantú at four months old. In early 2016, genetic results… Continue Reading
Rachel’s 15 Year Journey Towards Helsmoortel-Van der Aa Syndrome Diagnosis
Rachel was born in November of 2000. She was born 2lbs 9oz at 32 weeks she was taken out due to no growth since 4 months gestation. She was… Continue Reading
A Wife? A Mother? What Was Possible With a Diagnosis of Congenital Adrenal Hyperplasia?
I am a 37-year-old wife and mother of three handsome boys and I have a disease called Congenital Adrenal Hyperplasia (CAH) with salt… Continue Reading
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
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
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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