Results for "light up for rare"

Ivy is my third daughter. With her I had a normal pregnancy with Ivy. As soon as she was born on the night of October… Continue reading My Little Warrior

Today is Rare Diseases Day, so in light of that I want to raise awareness of my diagnosis, in the hope that someone else may… Continue reading I’d like to get off the boat now please.

Mina is a 7 year old girl who was diagnosed at 1 with TTD, a rare genetic disorder that has a broad spectrum of what… Continue reading Life with TTD

I am Clive, an active, fit, and to the naked eye a healthy British Army veteran. In 2019, after several years of deteriorating function and… Continue reading Making the Most of Now

I am Kamran from Azerbaijan and I am 25 years old. Since birth I have suffered from Dystrophic bullosa epidermolysis. I could have not imagined… Continue reading Dreams through pain

My sight loss journey started in October 2019, when I was twenty-three years old. It began with a large spot just off my central vision… Continue reading Working To See The Big PICture

Ethan (6), was born with the rare skin condition, epidermolysis bullosa (EB), his skin is as vulnerable as the wings of a butterfly and with… Continue reading Living with EB

This video was taken on 28 of February 2021 just weeks before Saarah passed away. It was very a very difficult video because Saarah was… Continue reading Saarah’s life