The story of Amanda
On May 12 2012 my precious angel Breonna passed away at the age of 6. At this time she was undiagnosed, almost a year later I had my fourth daughter Arionah I immediately knew something was wrong. A year after entering the gnome study my girls were diagnosed with Progression Cerebello Cerebral Atrophy Type2. This disease was found in 2013 a year after Bre’s passing. PCCA2 is a crippling disease with no cure. Their brain starts to shrink at about 4 months old and the regression begins along with seizures and severe stiffness. We are the only ones diagnosed in Canada and the US. I am so terrified for my now 3yr old who is not doing so well. Thank you for this organization I don’t feel so all alone.