I want to share the story of our beautiful daughter, Fynlee. I hope to share what life is like when faced with a disease you… Continue reading Facing the unknown with PBD
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Our sweet Leila was born on December 29, 2014. She was born at 39 weeks and was 8 lbs, 2 oz. There were no complications… Continue reading Our Little Miss Sunshine
I was an active mom, wife and person who worked full-time, was studying at a Graduate level and just trying to live life to the… Continue reading Surviving Subglottic Stenosis
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