Results for "light up for rare"

From June 2018 I realised something was “just not right”. I was overwhelmed with the feeling that something was wrong even though I couldn’t pinpoint… Continue reading Tarsha’s Story

I am Samriddhi and I suffer from Congenital Panhypopituitarism.(CPHP) Congenital means by birth. Pan means all. Hypo means less or absent. So panhypopituitarism means less or… Continue reading Life with Panhypopituitarism

It seems like everyone around me is normal. They wake up in the mornings, feeling pretty okay. Refreshed from last night’s sleep. Charged. Perhaps they get… Continue reading I Need A Place To Fit In

Hello!  Meet Hannah, my daughter.  She is, and will always be, my inspiration. Hannah is 9 years old. She loves to eat Broccoli (hence the… Continue reading Hannah’s journey with Cornelia de Lange Syndrome

Our story began just 3 days before Rare Disease Day. On February 25th, 2018 our daughter Lily Reagan was born. Immediately we noticed something was… Continue reading How Zellweger Syndrome Changed Our Lives For The Better

Matthew May’s Rare Disease story is like many; it has a beginning, a middle but no end… Unlike many Rare Disease stories; it is full… Continue reading Mighty Matthews journey through Morquio

My son Albert found his tribe in the spring of 2015. He was 5 years old then. Born in 2009, Albert had a rough start… Continue reading ADNP-syndrome – Breaking out of the bubble.