A dedicated team changes lives with dream bedrooms for children with life threatening illnesses.
Experts tell us that love and gratitude can be the most healing medicine in our lives. Special Spaces Houston is combining these potent forces to enrich the lives of special kids, and their families, who deal with life threatening illness every day.
Kristy Tankersley was beginning to wonder what she would do with her time when her kids went off to college. “I knew I wanted to do something with purpose, but I couldn’t quite figure out what that would be,” she says.
So she prayed about it.
The answer to Kristy’s prayers came late one evening on the television show, “The Secret Millionaire.” “The secret millionaire on the show was looking around Knoxville, Tennessee for places to volunteer, which lead her to Special Spaces,” Kristy recalls. Immediately, in just that one episode, Kristy says she felt a connection to the Special Spaces purpose: Creating dream bedrooms for children with life threatening illnesses.
“As I watched, I felt so drawn to their mission and purpose,” Kristy says. “I am blessed with two healthy children, but there are so many children who are suffering. Children and families who need help.”
The more she thought about it, the more committed she became. “I did not go to bed that night. I woke my husband up I was so excited,” Kristy says. “I emailed Jennifer Swain, Executive Director of Special Spaces Knoxville, probably about 1:00 that morning! And I posted on my Facebook page asking anyone if they’d seen the show and if they wanted to help this group.”
Special Spaces Houston was born.
Jen Dennings is a teacher, wife and mother of a special son named Cody. Cody has a disease called FOP (Fibrodysplasia Ossificans Progressiva)—one of the rarest, most disabling genetic conditions known to medicine. FOP causes bone to form in muscles, tendons, ligaments and other connective tissue, progressively restricting movement and forming a second skeleton that imprisons the body in bone.
Cody’s condition showed up when he was 2 weeks old, with a few abnormal bumps on the back of his head. Other than that, he had no signs of the disease until he turned 8 years old. For eight years, Cody enjoyed the life of a normal, active boy and developed a passion for skateboarding. Then, when he was 10, a skateboarding fall left him with a frozen elbow and a new reality.
“Cody fell on his elbow and didn’t tell us,” his mom recalls. “Within two days it locked up and he could not bend his arm at all. We knew it was FOP and that skateboarding would be very dangerous for him. But we also wanted him to be a kid and not be locked up in his room all the time.”
Any fall or bump could cause Cody’s other joints to stiffen and freeze. Cody understood the consequences, and reluctantly agreed to give up his skateboard. But he could not give up skateboarding. So he took up a camera and became the skateboarding crew’s videographer.
“Cody always remains strong in the face of adversity,” Jen says about her son. “Every time FOP affects his body he shows admirable patience and endurance. He just calls it ‘something that happens to my body’ and deals with it. We’re devastated for a few weeks, but he adjusts and moves on. My husband and I are always amazed that he always finds a way to adapt.”
Even at school, Cody amazes his teachers and friends. He’s a sophomore at Clear Falls High School and attends regular general education classes. “Cody wants to be like everyone else,” his mom says.
Cody’s bedroom is a reflection of his love for life…and skateboarding. Even though he can’t skateboard, he videotapes his friends and brother and has become the manager of their team—Synergy Skate. He regularly attends professional skateboarding events and collects posters, autographs by pro skaters and other skate stuff. But his room was a logistical challenge for Cody.
Power of Love
Kristy was busy organizing her team and planning the early stages of Special Spaces Houston. “When we started out our vision was so small we literally saw it as helping a sick child, knowing how much time they spend in their room to recover,” she says. “Then, after the first room, we realized that a mom is only as happy as her child, and the entire family is affected by a child’s illness.”
Kristy was introduced to Cody when he was nominated by a family friend via the Special Spaces website (www.specialspaceshouston.org). She learned that there were many modifications the Special Spaces team could make to help Cody navigate his bedroom easier (his elbows and shoulders are frozen, making it difficult to turn on lights, ceiling fans, and other simple tasks). Plus, they wanted to add a “cool” factor to his room!
The photos, taken by Special Spaces board member Marie Sharp, tell a better story than words possibly could. “Now Cody loves his room and likes to hang out more with his friends. He’s got a new flat screen TV and X-Box,” Jen says. “And now he spends a lot more time editing video and showing it to friends.”
How does changing one bedroom change the whole family? “It has brought us together in a way that is exciting,” Jen says. “Even though Cody’s a happy child, it made him feel so special and gave him something to look forward to and share with his family and friends.”
“These kids are special,” Marie says. “Getting to know them and their families is a true blessing. In one way or another they are fighting for their lives. Hope is what we want them to have. If we can provide them something that they can look forward to and get excited about, that is the moment when something moves inside of you and you are changed. Through this mission, sometimes our hearts will ache, sometimes our hearts will break, but most of the time we can open the door to a beautiful new bedroom and just make a kid’s day, and that's what I love...that's the true joy!”
Gratitude and Love Pay it Forward
“Cody is so grateful for everything people do for him,” Jen says. “We will definitely be paying it forward. We want to be involved in the next child’s room. Even if we just bring food or paint or something to help out. It’s an awesome project.”
“Designing and decorating dream bedrooms for sick children to recover in was what I thought I'd be doing as a member of Special Spaces Houston,” Kristy shares. “That sounded great to me, and it was something I felt excited about and prepared to do. However, I had no idea how much greater our role would be in these children's lives, and what a huge impact they would have on me. It is, without a doubt, the most rewarding thing I've ever done and I’m so grateful for this opportunity to serve. Until recently, it was also the most fun. Somehow, I never let myself imagine a child not getting better and not getting the chance to recover in the Special Space we'd prepared.”
In April, while creating a Special Spaces bedroom for Evan Donovan, he lost his battle with leukemia. “Now, with the loss of Evan, I learned another lesson. Loving these kids and their families is our real job. The rooms are only a result of our love. We are heartbroken over losing Evan, but loving him and his family was worth the pain. It is a risk to love these kids and their families, but it is a risk worth taking. With our community's continued support, there is no stopping us!
Add a special thank you to Special Spaces team.
Special Spaces Welcomes Donations,Volunteers and Nominees
Time, money and other resources are a valuable part of Special Spaces’ success. If you’d like to donate or get involved, contact them at www.SpecialSpacesHouston.org. You can also nominate a child for a Special Spaces dream bedroom at this website.
www.IFOPA.org provides support for families dealing with this rare and devastating disease. FOP affects one in two million people. There are currently four people in Texas with FOP.
Photos by Marie Sharp
Will revise and use this info for captioning photos when design is complete. I may need more details about the decorating but can get to that later:
His favorite passion is skateboarding. In his room he had posters, he goes to lots of professional skateboarding events and has lots of autographs. Tony Hawk – even though he doesn’t skateboard anymore, he videotapes his friends and brother and developed synergy skate team. He’s the mgr and videographer – edits the videos and shows them on the TV on his room. Donated used skateboard decks, made headboard and bench and metal wall he can put magnets and pictures of pro skaters.