Page 47 - OCT 2018 The Castle Pines Connection proof 2

CastlePinesConnection.com
Golf for a good cause
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By Daniel Williams, photos courtesy of Kristen Narlinger
On September 10, 144 golfers played a round at the Birdies for Butter ies Charity Golf Tournament held at the Blackstone Country Club in Aurora.
As the golfers enjoyed a beautiful fall day lled with fun and laughter and the occasional amazing shot, they also had an opportunity to learn more about Epidermolysis Bullosa or EB, a rare genetic disorder that causes painful blisters on children’s skin that’s been compared to having third-degree burns.
“It’s the worst disease you’ve never heard of,” said Kristen Narlinger, a Castle Pines resident, who coordinated the event along with Larina McClain, whose nephew William was diagnosed with EB at birth.
The Butter y Children
EB a ects one of out every 20,000 births in the U.S. and approximately 200 children are born with it each year – children like William, who
are heavily bandaged to protect their damaged skin. Narlinger said, “Children born with EB are often called Butter y Children because their skin is as fragile as a butter y’s wings.” EB can also a ect the respiratory tract and digestion.
McClain created a blog for William to celebrate his life and to create awareness for EB. She writes, “Imagine life as a mother, wanting to comfort your child in pain but you cannot, because the slightest friction will cause your child’s skin to blister and tear... Bandages must be changed every other day and can take three adults up to four hours to complete.”
Despite all of the challenges William faces on a daily basis, McClain writes that he “smiles all the time” and loves “science, nature, horseback riding, and most of all, music!”
Birdies for Butter ies
The Birdies for Butter ies event helped raise more than $35,000
for EB, according to Narlinger. Money came from registration fees to play in the tournament as well as from corporate sponsorships and silent and live auctions. The money will bene t The Butter y Fund, an organization that “helps families in the U.S. who have children (up to age 18) who have a catastrophic life altering medical condition or event,” according to The Butter y Fund website.
There is no cure for EB, but several clinical trials have been conducted to study and combat the genetic disorder and Narlinger said it’s important for more people to hear the stories and learn what the children and the families go through. She had an example from the charity event.
“A mother who adopted two children with EB spoke at our reception dinner,” she said. “One of the children was from China and another was a child born in the U.S. who had been abandoned at the hospital. It was heartbreaking to hear these stories, but
also uplifting to see people connected by these stories and these wonderful children.”
To learn more about Birdies for Butter ies, The Butter y Fund or William’s story, visit birdeasepro.com/birdies4butter ies | thebutter yfund.org or HopeforWilliam.com.