Bryan Berry says he never knew a real hero until his daughter became one.
For more than 18 months, 10-year-old Trinity Berry has been battling a rare form of cancer.
“The children who are fighting these illnesses, they’re the true heroes. They just want to be normal. They don’t want attention. They don’t want anything other than to just not be sick,” Bryan said.
In November 2011, Trinity was experiencing trouble breathing. Tests revealed she had a tumor in her chest that went through her lung, pulmonary vein, renal artery, right bronchus and the left atrium of her heart.
“We didn’t know the extent of it, but she was admitted to St. Jude Children’s Hospital where they did more testing,” Bryan said.
Trinity was eventually diagnosed with a myofibroblastic tumor and has been receiving treatments at Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville. Bryan says Trinity’s doctors thought Vanderbilt was where she needed to be. She has been the recipient of several different medications, but, Bryan says, the side effects can be severe.
“At one point, doctors felt like the tumor was small enough that they could go in and remove it,” Bryan said.
The tumor was removed, but Trinity also lost two-thirds of her right lung.
“After the surgery she had several months of medicine and they told her that they thought everything was good. Her scans were clear,” Bryan said.
But recently doctors discovered two nodules growing on Trinity’s diaphragm. Bryan said they will find out at the end of this month where things stand.
In the meantime, Trinity, a rising sixth-grader at Sullivan North Middle School, will receive a special treat on Saturday — just one day before her 11th birthday.
Thanks to Special Spaces Tri-Cities, Trinity’s bedroom will get a total makeover.
Special Spaces is a national nonprofit organization that focuses on making a difference in the lives of children with life-threatening or life-challenging illnesses by designing and creating their dream bedrooms.
Through the support of what looks like a small army of volunteers and sponsors, bedrooms are transformed in usually just one day.
Krista Wharton and Tamara Marshall are co-directors of the Special Spaces’ Tri-Cities chapter.
And with the help of many donors and volunteers, Wharton and Marshall have now created eight dream rooms since December 2011.
Trinity’s will be the group’s ninth bedroom makeover — and the first makeover for a girl.
Wharton first got the idea to start a local chapter of Special Spaces after she saw an episode of ABC’s television show “Secret Millionaire” last year. The show featured Special Spaces in nearby Knoxville, where the charity was founded about eight years ago by Jennifer Swain, a single mother of nine children.
“Special Spaces is not just a volunteer opportunity for me. It’s my ministry. It’s my calling. It’s my passion. We don’t just make the rooms pretty. We do so much more than that. We give these families hope. These children spend so much time in the hospital and their parents spend so much time trying to be there for their children, there’s just not much to look forward to,” Wharton said.
“But when they come back from the hospital, they need a space that is welcoming and soothing that is all theirs. When the children are old enough to tell us, we interview them and ask them what they like. What is your special space? What would be your ideal room? What’s your dream room? And they forget for just a few minutes that they’re sick. They can have some joy just knowing that somebody wants to do something for them. It’s something for both the parents and the kids to look forward to.”
Johnson City’s CrossBridge Wealth Management is the business sponsoring Trinity’s room makeover.
Sponsors help with the cost of the room makeovers, which Wharton says usually cost between $3,000 and $5,000. Employees of the sponsoring business usually volunteer their time and skills the day of the makeover.
“We do way more than make (the rooms) look pretty. We add furniture, computers, TVs, equipment. We also do some construction work, if needed, and make necessary repairs. We’ve replaced carpet with hardwood floors, installed new windows, new light fixtures and, in one recent makeover, added a new handicapped-accessible shower,” Wharton said.
“We do everything our budget allows to make life better and easier for the child and his or her family. And, of course, we add some fun items, too, depending on the child’s age and room theme. We never want a sibling to feel left out, so we always do something special to include them, whether it be giving them a fun toy or a mini-makeover for their room.”
And although Wharton says she can’t share too many details about Trinity’s room makeover, she did say it’s “glam-themed with lots of bling.”
Bryan says Trinity is thrilled to get a bedroom makeover.
“For so much time, her room was a hospital room,” he said. “To have something done that’s personalized just for her is really uplifting for her.”
Trinity and the rest of her family will travel to Pigeon Forge for the day while the makeover takes place Saturday at her Kingsport home. TriCities Entertainment Live will stream Trinity’s bedroom “reveal” live when she returns home around 6 p.m. at http://www.livestream.com/tricitiesentertainmentlive
For more information about Special Spaces Tri-Cities, including how to sponsor a dream bedroom, refer a child, volunteer or donate, call Wharton at (865) 748-3445 or Marshall at (423) 483-8344 or email email@example.com or firstname.lastname@example.org.
You may also visit the organization’s Facebook page at https://www.facebook.com/pages/Special-Spaces-Tri-Cities/262830297082504 where you can see before and after photos of previous makeovers.