"Imagine having skin as fragile as paper".“One of the most frustrating things for me is the itching. It’s like my whole body is on fire and I have ants crawling all over me. It’s so overwhelming.” - Maëlle.Painful

In 2010, my life and my husband's was turned upside down when I developed central pain syndrome, CPS, (AKA thalamic pain & post-stroke pain) secondary to a brain hemorrhage from a cavernous malformation,

We received Flynn's diagnosis July 17 but had been on the journey to finding out what was happening on the inside for him since birth.   Fast forward to the day we received his diagnosis and it was a really