I would like to share my miracle story with others to help inspire them and give them hope it’s a way of me paying it… Continue reading My miracle journey
Results for "light up for rare"
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At 10 weeks pregnant, I can still remember the look on my ultrasound technician’s face. “They told you you were having a baby? ” Well,… Continue reading The Red and White Twins
The NYC Police Department will host its 2nd Annual Rare Disease Day at Police Headquarters. The event will highlight several Police Officers chidren who have… Continue reading New York Police Department (NYPD)
After over 13 years of living with my ITP I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the… Continue reading Always Tired and Bruising Like a Peach
Here I am again on the road. I spend more than half of my life in cars driving to and from Hospitals, Clinics, Doctor’s Offices… Continue reading On the Road AGAIN!!
I have spent the majority of my adult life SICK. When I say sick I am not speaking about a common cold or even a… Continue reading The Skin I live in
Hello this is Reyna! She is 3 years old. Last year in May the day after her 3rd birthday, she was diagnosed with a rare fatal… Continue reading Reynas Fight with MPSIIIA
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
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