Harper is Rare

Harper is Rare. By Amber Reynolds

Harper is rare because she has an ultra-rare syndrome, Okur-Chung Neurodevelopmental Syndrome, caused by a mutation on the CSNK2a1 gene.

Harper is rare because she is 1 out of 200 with this syndrome.

Harper is rare because she talks using a communication device.

Harper is rare because she looks at life through rose-colored glasses.

Harper is rare because she is an empath and loves and cares for all her friends despite having autism.

Harper is rare because she skis, bikes, hikes, swims, and more despite others with her syndrome having physical challenges.

Harper is rare because she flaps her hands when she is happy.

Harper is rare because when she is being naughty, she has a sparkle in her eye and a sneaky laugh.

Harper is rare because she is a preteen and she could care less about her looks or trying to fit in.

Harper is rare because she doesn't like hugs or physical touch, unless it's on her own terms.

Harper is rare because she can vanish out of your sight within seconds.

Harper is rare because despite the challenges she faces Harper's sparkle never dims.

Harper is rare and as precious as a diamond.

We love our RARE beautiful daughter, Harper Elizabeth, and all her qualities and facets.

Happy Rare Disease Day on the rarest day of the year!

February 29th, 2024