Amy Grover

Sudden Seizure Spurs CDKL5 Diagnosis for Kaleah
Kaleah is a very happy and active two-year-old little girl. I can see it in her eyes that she longs to be normal, to participate in the… Continue Reading
Life Forever Altered: My Diagnosis of Gastroparesis
I didn’t use to be the kind of person who shares her personal information – but things have changed since February 2014, when I spent a… Continue Reading
The Story of Sam’s Rare Diagnosis
Until February 2013, our two-year-old son, Sam, was a completely normal child.  There were no problems during my pregnancy or his… Continue Reading
Sophia With Rhizomelic Chondrodysplasia Punctata (RCDP) Needs Your Help
Rhizomelic Chondrodysplasia Punctata (RCDP) is a rare terminal form of dwarfism. There are less then 100 diagnosed children in the world. At… Continue Reading
Ukraine Boy Experiences Heart Failure
Baby Bogdan was born on 09.12.2013 in Kiev, Ukraine. Eight hours after birth, he was moved into intensive care where cardiologist… Continue Reading
Helpless Reality: Finding Answers for My Son’s Rare Portal Hypertension
We never felt so helpless as we did back in July 2011, when Patrick began his given journey at a year old. As a baby, we never realized… Continue Reading
Piper’s Story: Premature Birth Reveals Metopic Craniosynostosis, Chromosomal Deletion
This is a story of a very special little girl. It was at my 20 week ultra sound  that my boyfriend and I  found out we were going to be… Continue Reading