Tag: "craniofacial disorders"
How I Became an Advocate for My Child’s Rare Condition
My child has a condition called MFDM that affects only about 200 people in the entire world. When he was diagnosed with such a rare condition, we felt incredibly alone. I needed to connect with other families who would understand.
Preparing for a Baby with a Cleft Lip/Palate
Preparing for a newborn is an exciting time for any parent. Here are some things to consider when you're preparing for a baby with a cleft lip/palate.
Traveling for our Son’s Endoscopic Craniosynostosis Surgery: What We Learned
For parents who may be in the middle of a craniosynostosis journey with their child, here's what one mom learned about getting second opinions, traveling for care, and helmet therapy.
5 Things I Want You To Know About My Daughter with Treacher Collins
Shana has Treacher Collins, a condition where some of the bones & tissues in the face aren’t fully developed. Read what her dad wants you to know about her: