'Windows for a Cause' will send 4-year-old with Chiari Malformation to Disney World

Posted at 10:40 PM, Apr 19, 2017
and last updated 2017-04-19 23:40:50-04

Spend just a moment with 4-year-old Delilah Presley, and your day is instantly brighter.

"She's so full of life. She's so full of energy. She's just a bundle of joy," explains Brian Gottlieb, President of Tundraland Home Improvements.

The Oshkosh girl was born with Chiari Malformation which is a defect that causes a skull to be abnormally small.

"Her brain is falling out of her skull is probably the best way to say it, so like the back part of her brain is kind of being smushed out of the hole in her skull that your spinal cord goes through," her mom, Alyssa Presley, explains.
The disorder threatens Delilah's breathing, heart rate, and ability to swallow. She also deals with leg pain, headaches, poor balance, speech delays, and cysts on her spinal cord which could cause paralysis.
"She might, you know, live with chronic pain like her whole life, so it's hard to swallow as a parent," Alyssa says.
Last July, Delilah underwent major surgery to her brain, skull, and spine.
"Her cysts are finally going down, so that was a very unexpected surprise. So, we kind of go MRI to MRI and just stay hopeful." 
Alyssa documents her daughter's difficult journey on her YouTube channel and her GoFundMe page. After the videos caught the attention of an employee at Tundraland, the Kaukauna-based company decided to choose Delilah as the recipient of its 2017 Windows for a Cause auction.
"I was just like so overwhelmed, and I like cried. I was like, 'This is crazy,'" Alyssa explains. 
Tundraland enlists the help of businesses, such as NBC26, artists, athletes, and community members to turn windows the company removes from client's homes into pieces of art. 
Delilah teamed up with Packers' wide receiver Jeff Janis and retired Packers running back Gerry Ellis for a painting event at Tundraland recently. Delilah and Janis painted Disney characters Elsa and Olaf from the movie Frozen, while Ellis created a golf course scene with a Packers 'G' on it. They also signed Packers jerseys and footballs to create an auction package. In all, 100 windows will be sold at the event with the goal of raising $15,000 to send Delilah, her little sister, and her parents on an all expenses paid, week long vacation to Disney World. It's a place they've always dreamed of visting.
"It's going to be so much fun," Delilah said with excitement. 
Gottlieb says, "We firmly believe that when we can make a positive impact in the life of just one individual, we actually start taking part in changing the world."
With Delilah's expensive medical bills, and Alyssa being a full time nursing student, traveling to Orlando was impossible. Now, thanks to Tundraland and the community, Delilah is looking forward to a trip that won't have to include a doctor's office. She's already making plans.
"Meet Mickey and Minnie, and the princesses."
Gottlieb says not only does the fundraiser bring joy to a family that is going through a tough time, Windows for a Cause also helps the environment by keeping old windows out of the landfills.
The 2nd annual Windows for a Cause event is being held on Tuesday, April 25th starting at 5:00pm at the Fox Cities Performing Arts Center in Appleton. There will be both silent and live auctions, live music, and food. Anyone is welcome. Admission is free.
Last year's event raised $15,000 to purchase a specialized wheelchair for Oshkosh military veteran John Green who has multiple sclerosis. The electric wheelchair allows him to move from a sitting to a standing position. He hadn't stood in 40 years.