Some people might call Susan Wintersteen a healthcare worker, but she’s not a doctor or a nurse.
She’s an interior designer and the owner of Savvy Interiors, and her work is helping heal the hearts and spirits of dozens of families at a critical time.
On this day Wintersteen is at the Lively family home in Lemon Grove where the excitement in the air is building like the moments leading up to Christmas morning. For weeks Wintersteen and her San Diego-based nonprofit Savvy Giving by Design have worked to transform 4-year-old Joshua Lively‘s room. He’s a fan of the PBS KIDS show “Wild Kratts” and his new bedroom is designed with this theme in mind.
Joshua, who the family affectionately calls “Joshy,” is the eldest of three Lively children. The long-anticipated room reveal was especially meaningful on this day because Joshy hadn’t been home for nearly a month.
The sign that hangs on the front of the Lively’s cheerful-looking home gives even strangers a clue about the challenges this family is facing. It says that a child with a compromised immune system lives there, and advises visitors to cleanse their hands and asks those with recent illness respectfully not to enter.
Joshy has cancer. He was diagnosed with Neuroblastoma on Thanksgiving Day 2018. In the months that followed, Joshy underwent chemotherapy and multiple surgeries, and battled through complications that put him back in the hospital, sometimes for weeks at a time. That’s why this particular day was so extra special -- Joshy was finally home after nearly a month in the hospital and was awaiting the reveal of a gift that would give him and his family a sense of hope and joy along their challenging road.
That joy and excitement are what fuel Wintersteen’s passion for using her talents as an interior designer to help children like Joshy.
“It gives me a perspective that I was really lacking after so many years working in design,” Wintersteen said. “It gave me a chance to not only use what I know instinctively as a designer I need to do but to have an impact on this child's healing more long term.”
Her mission of using creative and functional design to help provide healing spaces for kids in need first began when her family friend’s child was diagnosed with cancer.
"The joke in our family is that I don't cook so I wasn't going to sign up for the meal train,” she said. “So, I said I would love to come in and maybe make her space a little bit better and see what we might be able to do to lift her spirits.”
The reality was that the room transformation had an impact far greater than Wintersteen could have ever imagined.
“They've got their doctors and their nurses and their treatment and their family, their friends and their cousins, and we are this little sliver, but for that little sliver we're trying to create a space that invites all of those other elements in and makes it easier for them to go through that treatment or to heal,” she said.
With the help of generous donations of time, money and products, the Savvy Giving team began helping other kids. In four years Wintersteen and her team have transformed at least 45 rooms.
“I draw a huge amount of inspiration from these kids because they've been through so much at such a young age,” she said.
The pictures of joy and surprise on the young faces of each of the recipients capture the heart of what this mission is all about. And Wintersteen constantly reflects on the countless stories behind each of those precious faces.
Room Makeover Reveals with Savvy Giving by Design
"Isaac who is paralyzed suddenly at 16. Soledad, a young woman who fought cancer for a year alongside her mom. Sweet little Hazel who passed away a little before her third birthday. And, of course, our first recipient Kasey. If it had not been a good experience I don't know that I would have been here,” she said.
Savvy Giving now has chapters in more than a dozen states and hopes to expand.
“I knew if I could do it here in San Diego that there were other designers that had those same talents that could do the same things across the country,” Wintersteen said.
Savvy Giving by Design recently partnered with Make-A-Wish San Diego to deliver design, comfort and function for wish kids.
“It's meant to be there to help them through this process of healing so it's maximizing their chances for rest, for recovery, for getting through their treatments,” Wintersteen said. “A place to retreat if they're stuck at home.”
Back at the Lively home, with excited anticipation, the family of five makes their way upstairs. Joshy knocks and opens the door to view his Wild-Kratts-themed room for the first time. There are exclamations of amazement, laughter, tears, and mouths wide open. There is a canopy bed with a TV, a mountain mural painted on the wall, a swing, and on the ceiling, a mural of the night sky with the stars in the exact position they were on the day Joshy was born. Keeping with the outdoor explorer theme, there are toys and soft pillows that look like boulders, and on the wall a framed picture with a verse from the Old Testament book that shares his name: “Be strong and courageous. Do not be afraid or discouraged for the Lord your God is with you,” Joshua 1:9.
It was enough to bring Joshy’s father to tears.
"Seeing a 4-year-old going through everything he's gone through and, you know, five, six rounds of chemo and five surgeries already, and just finished a stem cell transplant, and now he has his own little area. It's just so awesome,” his father Joshua Lively said.
Through her tears Joshy’s mom, Kristen Lively, expressed how Wintersteen is doing so much more than decorating a room – she’s actually inspiring hope and healing.
"Down to the hand sanitizer dispenser in the room and the recessed lighting so we can do medications and feedings at night and come in here without waking him up," she said.
The thoughtfulness of this personalized room reveal is exceptional. At just the right moment, Wintersteen gets the attention of the excitedly distracted 4-year-old and shows him something on her phone. It is a personalized video message from Chris Kratt of “Wild Kratts.”
The video encourages Joshy and lets him know the “Wild Kratts” team is thinking of him. This moment is another example of the inspirational commitment Savvy Giving by Design has to making each child’s experience something extraordinary.
Kristen Lively said they are grateful beyond words.
“He can't be around other kids and he can't really go out in public and he has to be really careful about germs, so having a place that he can just be happy in and be joyful just means the world,” she said.
She and her family hope to pay it forward and help Savvy Giving by Design in the future. Wintersteen said she is constantly moved by the generosity of others.
“It’s been overwhelming to see how people have had this desire to pay it forward or to donate or give to this mission,” she said.
Savvy Giving by Design also does makeovers for all of the siblings of the children they help.