The story of Paisley

Paisley has a rare form of a rare disease called Blue Rubber Bleb Nevus Syndrome. She had just turned 4 when she was diagnosed, after months of bleeding from her colon. I was told it was “just anal fissures, just hemorrhoids, don’t worry”. Then one day it was just too much blood and I finally got her into a GI doctor. Colonoscopy and toddler don’t mix. It was awful. And the news we got after was so much worse. I think my husband and I cried for a week. We were totally shocked, depressed and scared.
Basically she has 7 vascular malformations in her colon. They are super sensitive and can bleed very easily. Some people living with this get month blood transfusions. Luckily Paisley has been very stable the last year.
We are currently in the process of moving across the country to be in a city with a doctor who treats BRBN. We currently have to drive 4 hours to another state for her to see doctors in a vascular anomalies clinic.
I want to bring awareness to Paisley’s disease and other vascular anomalies so that more research can be done and we can stop living with so much uncertainty.
My daughter is the bravest 4 year old I know but I want her to just be a kid and not have to be so brave.