Brenna was born with harlequin ichthyosis, a rare genetic skin disorder that affects the top layers of her skin. Her skin produces rapidly (about ten times faster than typical skin), and she has trouble with typical skin functions, such has regulating her body temperature, retaining moisture and keeping germs out of her body.
“The scariest moment for us was being told, when she was 5 days old, that she had a very aggressive blood infection and might not make it through the night. The happiest moment was seeing her walk confidently across the stage at the CMN Momentum conference representing the state of Illinois, high-fiving the crowd while everyone cheered.”
Today, Brenna’s prognosis is hopeful. She is a happy 9 year old and loves reading and playing with her brother!