Seeing their baby girl’s skin at birth, Courtney and Evan learned their daughter has a rare skin disease, Harlequin ichthyosis. But they lean on their faith and unconditional love to help navigate the daily challenges posed by this condition.
When parents Courtney and Evan Westlake found out they were pregnant for a second time, they were ecstatic. They were expecting their first girl and named her Brenna. Everything seemed to be normal with the baby as the doctors were doing their routine checkups during Courtney's pregnancy. But as soon as their daughter was born and they saw her skin, the parents knew something was terribly wrong.
When Brenna was delivered, she had a thick, white covering all over her little body. Not only that but she also had an extremely high temperature, sores that covered her whole body, and she was not able to move easily.
Because of her condition, doctors moved Brenna to the neonatal intensive care unit. Courtney and Evan had to wait two weeks until after she was born to finally hold her in their arms.
The doctors explained to Brenna's parents that she "suffered from a hereditary disease called Harlequin ichthyosis, in which the body produces skin 10 times too fast for normal growth." There is no cure for Harlequin ichthyosis.
Rare Skin Disease Harlequin Ichthyosis Affects All Aspects of Family’s Life
This rare and severe skin disease has greatly affected Brenna and her family's life. According to Courtney's blog, she says that her daughter "has battled through multiple surgeries, skin infections, hospitalizations, and many other challenges", including motor delays and food intolerances.
Since Brenna is unable to produce sweat, her parents have to monitor her temperature to minimize her risk for infection.
"Our days are filled with applying Aquaphor to keep her skin moisturized and comfortable, a long daily bath where we can exfoliate the extra skin she makes, and lots of eating because Brenna's body uses so many calories simply to produce skin!"
Brenna does continue to grow stronger every day, despite her disease. And the unconditional love that she receives from her family is such a blessing!
It’s inspiring to see how this family does not let their circumstances steal their joy. "Our days are full of uninhibited joy, real contentment, gratitude and faith in God," Courtney shares. "Physically, Brenna is much different than we expected. And we are discovering day by day, week by week, just how beautiful different can be."
WATCH: Family Talks About Being Blessed By Brenna
Featured Image Credit: Youtube/Blessed By Brenna/Decatur Television
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