Harper is Rare

Harper is Rare. By Amber Reynolds

�55358;�56812;Harper is rare because she has an ultra-rare syndrome, Okur-Chung Neurodevelopmental Syndrome, caused by a mutation on the CSNK2a1 gene.

2️⃣0️⃣0️⃣Harper is rare because she is 1 out of 200 with this syndrome.

Harper is rare because she talks using a communication device.

�55357;�56403;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.

�55357;�56395;Harper is rare because she flaps her hands when she is happy.

�55357;�56860;Harper is rare because when she is being naughty, she has a sparkle in her eye and a sneaky laugh.

�55357;�56842;Harper is rare because she is a preteen and she could care less about her looks or trying to fit in.

�55357;�56901;�55356;�57339;‍♀️Harper is rare because she doesn't like hugs or physical touch, unless it's on her own terms.

�55357;�56488;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.

�55357;�56462;Harper is rare and as precious as a diamond.

�55358;�56607;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