Brenna is our 2016-17 Ill. Champion

When Brenna was born, her parents thought the thick white coating covering her body needed to be wiped off. They quickly learned that Brenna has Harlequin ichthyosis, a rare genetic skin disease, in which her body lacks a protein that helps skin form correctly and overproduces at a rate at 10 times the average. Brenna is unable to sweat and her skin is tight, dry and constantly peeling. She’s highly susceptible to infections, needs her temperature monitored closely, requires long daily baths and eats more than the average kid her size because her body uses so many calories to make skin.

Her condition is so rare that experts say there may only be 100 cases in the world. Yet to this sweet, spunky, sassy fashion queen, she just has “special skin.” And that doesn’t stop her from doing the things she loves like shopping and going to the library and museums. Thanks to advances in medicine, Brenna can have a long, full life.

How donations helped Brenna at HSHS St. John’s Children’s Hospital:  

Brenna spent the first six weeks of her life in the neonatal intensive care unit where she stayed in a specialized Giraffe bed for premature infants and held by her mom in a unique kangaroo chair — all funded by CMN Hospitals donations.