Each Thursday join us for #RareDiseaseTruth
The Jansen's Foundation founder, Neena Nizar is an incredible human and trailblazer! We love their campaign #rarediseasetruth! It is raw, powerful and brave! Daily we put on a smile, push through unimaginable exhaustion and no one really knows our truth - That rare life can be extremely hard, isolating and heartrending. Continuing what Neena started, every Thursday we will share a #rarediseasetruth from our community.
"Because my daughter doesn't "look" disabled, people do not accept she has a rare disease."
"My adult child, who does not have OCNDS, has missed out. She has not had the best of me as a mum, as I was distracted with her sister with OCNDS, who took a lot of time away from her. This has impacted her life and our relationship."
"Said by a woman at church who met my family for the very first time. She should be VERY glad that there were 4 pews between us." OCNDS parent, Terri J.
Rare life is real life. Feeding tubes - a part of rare life most people don't have to think about. Rare Disease Truth Thursday inspired by the Jansen's Foundation.
Thank you A.R., an OCNDS parent, for starting this conversation in our community and sharing your #rarediseasetruth. "It hurts my mama heart that our daughter has never been invited for a playdate or a sleepover. I am always inviting other kids over to our house so my daughter feels special. But I would love for her to be invited over for a playdate or sleepover two reasons. One, most importantly, for my daughter to feel loved and special. Two, just to have a mama break of respite.”