Results for "light up for rare"

Hi there! I’m Kim- Greyson’s mom. Greyson is a 2 year old amazing little boy who was diagnosed with Infantile Tay-Sachs disease March 26, 2021.… Continue reading Leaving a legacy

My name is Michael and my nickname is 1RareZebra. A zebra is someone who has rare medical condition(s) and in my case (4) of them.… Continue reading Living with multiple complex chronic conditions

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