Avery's Room

2015 St. Jude Dream Home at Chapman Farms

The kids of St. Jude are the reason we undertake the Dream Home project each year, and as long as they continue to battle cancer and other catastrophic diseases, it will remain essential that we support them in their fight. The Dream Home Giveaway not only raises funds to support the hospital, but spreads the word about St. Jude’s mission, the patients and their families. Many of these families live right here in Kansas City, and the Summit team is lucky enough to spend time with them and learn about their experiences. These families inspire us and remind us why this project is so meaningful, and it is important to us that they are part of the Dream Home and that we share their stories with everyone who comes to see it.  

Meet Avery

St. Jude patient Avery (front left) with her family.     Avery was diagnosed with a craniopharyngioma brain tumor in December of 2013 when she was 9 years old. Her parents turned to St. Jude for help, and Avery underwent surgery to remove the tumor and received proton radiation therapy as well. Today Avery is a bright and creative 10-year-old with a kind heart and generous spirit. While she is in overall good health, she is still learning to deal with many side effects caused by the treatment of her tumor. Most of her challenges are things that people don’t see on the outside, such as an inability to regulate her body temperature, excessive thirst, diminished metabolism, inability to handle stress on her body, and chronic fatigue. Despite these obstacles, Avery and her parents remain positive. “We know she is one of the lucky ones.  Many kids with this brain tumor have all of these issues as well as vision loss, hypothalamic obesity, hearing loss and significant cognitive deficits,” says Avery’s mother Tiffany. Last year, Avery started drawing flowers with markers and pencils. She went exploring on Pinterest and was inspired by pictures she saw of paper flowers decoupaged on canvases.  Avery began creating similar pieces and selling them to her teachers and parents’ coworkers. Avery presented the Summit team with a piece of her artwork at a breakfast celebrating the groundbreaking of the 2015 St. Jude Dream Home. For Avery, her artwork is a fun, relaxing thing to do to relieve stress and also a means of giving back to St. Jude. She’s saving all profits from the sale of her work to dedicate a brick in the new walkway at St. Jude that will lead to the Kay Research and Care Center, where patients will soon receive the proton radiation therapy that treated Avery’s tumor. At the groundbreaking for the 2015 St. Jude Dream Home at Chapman Farms, Avery shared her passion for her artwork with us and gave Summit one of her pieces as a gift. Our designer, Darrell Naeger, was touched by Avery’s story and inspired by her budding creativity and talent. “I immediately knew I wanted to recreate her artwork somewhere in the Dream Home and over time the idea morphed into creating an entire room inspired by Avery’s personality and influenced by her art,” says Darrell. On June 1, Darrell met up with Avery, her family, and some volunteers from the Summit team for a craft night. Their goal was to recreate an enlarged version of the art piece that Avery gifted to Summit on the wall of one of the bedrooms in the home.   Unbeknownst to Avery, the craft night was just the beginning of Darrell’s project to create an entire room dedicated to Avery and designed with her in mind. He found bedding from Pottery Barn Teen in a petal design reminiscent of Avery’s work, and tracked down letters to spell out her name on the wall, which he customized with crafty details. “We brought Avery in to help us recreate her art on the wall, but we kept the rest of the design a secret and planned a special reveal for her,” Darrell says. We were thrilled to have Avery and her family join us this past weekend to celebrate Junerosity in the Chapman Farms community. During the festivities Darrell surprised Avery by revealing the completed room to her while she and her family enjoyed a sneak peek tour of the Dream Home.   The Summit team will be forever grateful to Avery and her family for sharing their journey with us and for being a part of the 2015 Dream Home and the Summit Custom Homes family.   Get all the info on the 2015 St. Jude Dream Home Giveaway here and follow us on Facebook for the latest updates and photos of the home. Tickets for the giveaway of the home may be reserved for $100 online or by phone at 1.800.385.9756.