Designer-Run Nonprofit Gives Kids Rooms to Heal

Local chapter of Savvy Giving by Design helps Rhode Island kids in need by giving them personalized spaces for comfort and healing

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"Years ago, I wanted to do something with my talents to give back – I just wasn’t quite sure exactly what that would look like,” remembers Janelle Blakely Photopoulos, owner and creative director of Blakely Interior Design in North Kingstown. She was looking to unite her professional background with a cause near and dear to her heart, which she knew had to do with children or domestic violence prevention. The answer came unexpectedly when she heard Susan Wintersteen, founder of Savvy Giving by Design, speak about her fledgling nonprofit on a podcast.

“The mission is to provide comfort, support, and healing to families that have children facing a medical crisis through transforming their interior spaces,” Photopoulos explains, and all of it is done at no cost to the family, who are often dealing with a mountain of medical bills.

At the time, Wintergreen was running the organization solely out of San Diego when Photopoulos reached out to see how she could get involved; turns out, she wasn’t the only one calling. With so many professional designers interested in starting something similar in their own hometown, Savvy Giving soon transformed into a national nonprofit with local chapters, including those in Alabama, Indiana, Texas, Florida, and New England. Photopoulos leads the one in Rhode Island.

“As designers, we strongly believe that your environment impacts your healing,” says Photopoulos. She adds that while most people think these children spend the vast majority of their time in the hospital, that isn’t true: Most often, they spend it in their bedroom between bouts of chemo or doctor visits. Therefore, “We approach [the projects] from a design perspective, but we also very much integrate what the child needs from a medical perspective.”

This means customizing rooms with special needs in mind, like adjusting for the use of a wheelchair or installing hooks to hang an IV bag. Most of the kids, many of whom are being treated for pediatric cancer, have compromised immune systems, so using organic fabrics and surfaces that don’t trap allergens is key. But it’s not just about the physical comfort of the child, but also the emotional, which is why Photopoulos highlights the fun design elements like an elaborate built-in canopy bed or dedicated art space. It’s about giving these kids a place to just be a kid, she says.

Since she started the affiliate chapter in 2018, Photopoulos and her dedicated board have transformed. First, Photopoulos put together a magical room makeover for Julia Powers, a 10-year-old facing complications from osteosarcoma (a rare bone cancer), that’s both easy to navigate with her walker and full of her favorite things: unicorns and Harry Potter. In 2020, she designed a colorful, cheery bedroom for Kyrie White, an eight-year-old born with gastroschisis, that features shelving for his toys, books, and medical supplies, plus incorporated his favorite animal, koalas. This project had an added challenge, Photopoulos notes, because the pandemic meant taking extra precautions to keep things safe for an immunocompromised Kyrie.

Today, Photopoulos is in the middle of turning an old powder room into a functional wet room, a completely waterproofed bathroom, for 12-year-old Dougie Horton, who was born with cerebral palsy and is now in a wheelchair, requiring full-time care. This project is a new one for the team at Savvy Giving, who typically transform bedrooms, but Photopoulos says, “This bathroom is going to be incredibly impactful not just for [Dougie], but it’s going to have a huge impact on his family.”

Each project by Savvy Giving is also an undertaking for the community. Local carpenters, contractors, and electricians offer their talents; in Dougie’s project, the plumber, is volunteering his time. Materials are often donated or offered at a discount, like the nearly $1,400-worth of plumbing supplies from Supply New England, and Hill & Harbour Tile is donating all of the tile. Volunteers can run out for last-minute items and help as needed on-site. Then, of course, there are the funds raised online or through fundraisers like the virtual Hearts for Dougie, which garnered $4,000 for the project in February. Through each little piece of generosity, Savvy Giving is able to change lives by changing spaces – and not just those of the kids nominated.

“We also do the sibling’s space,” says Photopoulos. She explains that the sibling is a huge part of support and healing, and oftentimes, when the attention is understandably focused on the child who is sick, they can feel left out. So whenever Savvy Giving selects a family and begins designing the space, they also do something special for the brother or sister. In Dougie’s case, Photopoulos will be making over his older brother Russell’s bedroom, too.

Says Photopoulos, “It’s very rewarding to be able to see these children have a place that they love to be in, that they are proud of, and that allows them to heal – and the pressure is off the family.”

To learn more about the national effort and check out affiliate chapters, visit
SavvyGivingByDesign.org.

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