Today is Jamison's special day. It's her birthday, July 18, 2018 and we're coming together today to raise awareness of Jamie's condition and raise funds for research on Cockayne Syndrome.
Jamison is 8 years old today, but her body is aging much faster internally. She cannot walk on her own or talk without assistance. She was diagnosed at 3 with Cockayne syndrome, a terminally ill disease. For 3 years, doctors were befuddled by her condition. There are fewer than 200 people worldwide with the same syndrome.
She is allergic to the sun, cannot sweat, and sadly, there is no cure for her disease. The syndrome results in short stature, premature aging, moderate to severe learning delay, hearing loss, tooth decay, vision problems, bone abnormalities and more.
Even with all of this, Jamison and her family have lived life to the absolute FULLEST! We arranged for Jamison to enjoy a special day at Tysons Corner Center. She is the sweetest girl you will have ever met. You'll instantly fall in love when you see her.
Watch Jamie pick out a new outfit courtesy of the style experts at Bloomingdale's, have her hair styled by the professionals at Paul Mitchell The School Tysons, and treated to the artists at the Esteé Lauder counter at Bloomingdale's.
Here are some more facts about Cockayne Syndrome:
- 200 people worldwide have Cockayne Syndrome
- 1 in 3.6 million are born with Cockayne Syndrome in the USA
- It takes 2 affected parents to pass it on to and then, just a 25% chance their child will have CS.
- It takes, on average, 5 years to be diagnosed properly with CS.
- Some families have multiple children during that time.
- There is a family with 5 children. 4 of the 5 children have CS. You'd have a better chance of winning Powerball 4 times.
Learn more about Jamie directly from her parents, here.