Special Spaces nonprofit gives sick child a special wish.
By David Leone
WAKE FOREST — Tucker Jordan may only be age 3, but he knows his favorite place: visiting his grandparents’ cabin in the woods with his father on hunting and fishing trips.
Tucker suffers from a life-threatening disease that keeps him home most of the time when he’s not in the hospital. But now he doesn’t have to leave the house to experience that trip to the woods.
While the family was out one day, Special Spaces of the Triangle remade his bedroom into an outdoorsman’s paradise, with special touches added by Wake Forest and Rolesville volunteers, among others.
“Oh, it’s so awesome. It’s really cute. They did an amazing job,” Tucker’s mom, Meghan, said. “He’s very excited. He had a really surprised look like he couldn’t believe it was true.”
Like a cabin
More than 40 painters, artists, seamstresses and community volunteers came together July 13 to prepare Tucker’s special space.
Elements included log cabin furniture; faux log cabin walls and doors; a woodsy mural on one wall featuring deer; a night light of a bear and moose roasting marshmallows; a log lamp, a deer antler chandelier and a fake bearskin rug.
One element, fake fish mounted to boards on the wall, was designed and made by Heritage Rolesville artist Suzie Luksis. Luksis was present with three other artists who do such projects as part of their own philanthropic organization, Carolina Creative Artisans.
“I do finished murals for a living,” she said. “We did the log cabin wall.”
“It’s great, especially (because) this is a good cause,” she added. “It’s amazing what you can do with just a little paint — you can transform the smallest space.”
Another woman from that organization is Jean Hunt of Wake Forest, who helped paint the walls and trim.
“I’m retired from IBM. I haven't done much volunteering until I joined the creative artisan group,” she said. “It’s very rewarding. I’m going to continue doing Special Spaces (projects).”
“It keeps me busy,” she added. “It makes you grateful.”
Tucker’s family lives on Rice Drive, Wake Forest, just over the Franklin County line. With his mom are dad, Scotty and siblings, Dylan, 9, Madi, 7, and Dustin, 4. He and Dustin share the bedroom.
Tucker suffers from Primary Ciliary Dyskinesia (PCD), a rare, genetic lung disorder. He wakes up every day with lung infections, severe sinus distress and earaches — and more.
In children with PCD, long-term complications from the infections can lead to hearing loss, early disability and lung damage requiring a transplant.
Due to his condition, Tucker has been hospitalized numerous times, has had more than 13 surgeries and procedures, endures frequent catheters and has a permanent port to receive IV antibiotics and therapy. He goes to UNC Hospital every three weeks for a five-to-seven hour blood transfusion. He takes a lot of medications and requires inhalers and nebulizer treatments to breathe properly.
In other words, when he’s not being treated, he’s at home, in his room.
“He can’t be in daycare,” Meghan said.
But Tucker is a positive kid. “He always has a smile on his face, a happy heart. He has been just amazing,” his mom said.
Scotty is a supervisor with PSNC in Raleigh. The family has healthcare, but the expenses not covered still add up, so the they could not have afforded to redo Tucker’s room on their own.
A friend of the family e-mailed Special Spaces to nominate them and the organization’s director, Katie Martin, called. She then came out and interviewed Tucker to see what he wanted.
Tucker let on that he loved going to Kerr Lake with his father.
“My parents live up at Kerr Lake. My husband loves hunting and fishing and outdoors stuff. He’s been fishing with him. [And] he sees what daddy brings home from hunting,” Meghan said. “We’re so blessed to be a part of the (Special Spaces) organization.”
Special Spaces has virtually no overhead — its entire staff is volunteer, including Martin.
The bedroom materials were funded through donations from Tucker’s primary sponsor, Contrast Creative in Cary, as well as through private donations from individuals and businesses.
The forest scene was donated by Magic Murals in Smithfield.
“Special Spaces of the Triangle hopes to complete four to six dream bedrooms each year for sick children in the Triangle area,” Martin said in a release.
“Special Spaces is about more than just bedrooms. It is about giving a child and their family hope and something to look forward to. It is about doing something that parents may not have the time, energy or resources to provide due to the financial and emotional stressors of their child’s illness.
“We most of all want to give these children a personal space that recognizes their unique personality, a place to hold their treasures, a place to dream about the future, and most of all, a place to find peace and refuge in a time of great uncertainty.”
This fall, the chapter will redo a room for Caelon Arthur, 5, of Wake Forest, who suffers from an extraordinarily rare genetic defect resulting in numerous strokes and physical disabilities.
Special Spaces of the Triangle is North Carolina’s only chapter for the nationwide nonprofit founded in 2004. Martin herself almost died at 16 from a blood disorder, so the mission is an important one to her.
“Our chapter has been active nine months,” Martin said. “We rely completely on donations and sponsorships. Artists donate their work, paint is donated, everything is donated or discounted.”
To reach Martin, call 919-805-4883 or e-mail KatieM@specialspaces.org.