- Associated Press - Sunday, April 17, 2016

SPRINGFIELD, Ill. (AP) - Courtney Westlake and her husband, Evan, haven’t gotten many full nights of sleep since their daughter, Brenna, was born more than four years ago.

“You just power through,” Courtney, 32, said of the struggle she and her husband go through each day to keep their daughter healthy and happy despite a rare skin condition that can make Brenna itchy, hot, cold and otherwise uncomfortable.

“We have a huge amount of support,” Courtney, a writer and author of the popular blog, blessedbybrenna.com, said of her many relatives and friends in the Springfield area.

Brenna’s selection as the 2016-17 Illinois Champion Ambassador for Children’s Miracle Network Hospitals will allow the Westlake family to be on the giving end of support for sick children, their families and professional caregivers.

“We know, without a doubt, that our vibrant, very strong-willed daughter is standing with us today because of the knowledge, the compassion and the high-quality care provided to her over the years from our local Children’s Miracle Network hospital,” Courtney Westlake said at a news conference Wednesday at Springfield’s Residence Inn by Marriott.

Brenna, who has a genetic condition called Harlequin ichthyosis in which her skin grows seven times faster than normal, will participate in fundraising activities for HSHS St. John’s Children’s Hospital as part of her status as a champion ambassador.

And her family members will serve as local, state and national spokespersons for the charitable needs of children’s hospitals.

The Westlake family, which includes Brenna’s 6-year-old brother, Connor, will travel as Children’s Miracle Network ambassadors to Washington, D.C., and Orlando, Florida, to share their story with national audiences at conferences in those cities, St. John’s officials said.

Illinois has three hospitals in the Children’s Miracle Network, which raises money for the hospitals. The other two network hospitals are the Children’s Hospital of Illinois at OSF Saint Francis Medical Center in Peoria, and Ann and Robert Lurie Children’s Hospital of Chicago.

Each hospital takes a turn each year in naming an Illinois Champion Ambassador, said Dave Newton, program coordinator for the Children’s Miracle Network at St. John’s.

More than $1 million to benefit St. John’s Children’s Hospital is raised by the network each year for things not covered by health insurance, such as the salaries of child-life specialists and certain equipment, according to Newton.

Swift action by doctors, nurses and other professionals at St. John’s Children’s Hospital - a 78-bed section of St. John’s Hospital - was key to helping Brenna survive infections and breathing problems that in the past killed many with her skin condition in infancy, Courtney Westlake said.

No one was aware of Brenna’s condition until she was born at St. John’s on Dec. 19, 2011. No one else in the Springfield area has it, and there are only about 25 people known to have the condition in the United States.

At the news conference announcing Brenna’s selection as a champion ambassador, Courtney Westlake specifically singled out Dr. Joseph Conlon, a Springfield Clinic pediatric dermatologist who had never treated a patient with the condition before, with quickly reaching out to other medical experts and then giving crucial instructions to the team at St. John’s on Brenna’s care.

Brenna initially spent six weeks in the neonatal intensive-care unit and was hospitalized five times in her first year of life.

Medical costs associated with her care since birth have exceeded $1 million, with most of the costs covered by health insurance through Evan Westlake’s job as a commercial lender at Illinois National Bank, Courtney said.

Fundraisers in the area have helped the family cover co-payments and afford services and medical supplies not covered by insurance, she said.

“We will be forever grateful for the neonatologists and the NICU staff for their quick action and their critical care as we all learned about Brenna’s rare disorder and how to care for it,” she said.

Evan Westlake, 30, said he and his wife expected the medical care at St. John’s to be top-notch, but they were equally impressed with the attention he and Courtney received from the staff.

“The compassion is what I didn’t expect,” he said.

Courtney Westlake said Brenna, who has no cognitive deficits associated with her condition, receives nightly care at home to remove excess skin and apply a special cream that keeps her skin moist.

She said Brenna is small for her age but doing well in preschool at Sherman Elementary, where a one-on-one aide helps her avoid infection and deal with some developmental delays.

Courtney said Brenna enjoys playing with her brother, who has a more laid-back personality, and Brenna is obsessed with the cartoon character Minnie Mouse.

The family is looking forward to its first trip to Disney World when the Westlakes will travel to Orlando for a Children’s Miracle Network conference, Evan Westlake said.


Source: The (Springfield) State Journal-Register, https://bit.ly/1SMGbaf


Information from: The State Journal-Register, https://www.sj-r.com

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