When Mariana Barbuto was told her treatment plan for scoliosis would include a custom-fitted orthopedic brace, she recalls having a mix of feelings and a lot of questions. As she and her mother, Tracy, were beginning to process these emotions, orthopedic surgeon with Upstate Orthopedics Rajin Shahriar, MD, gave her a stuffed bear that was wearing a brace very similar to the one Mariana herself would soon don. This bear had been donated to Upstate Orthopedics by a former patient, Hailey Rinaldi, to help ease patients and their families as they begin their scoliosis bracing journey. Holding this yellow bear wearing a butterfly-patterned brace, Mariana began to feel less alone, and by the time she made it out to their car, she knew she wanted to find a way to provide bears to other scoliosis patients.
Mariana had been gifted a Higgy Bear, a stuffed animal companion lovingly designed specifically for kids with scoliosis. Created by Lauren Higginson after walking her own scoliosis journey, Higgy Bears help to build a community for scoliosis patients and their families, and they provide comfort and create unity during an uncertain time.
Confronting the anxiety of her new situation, Mariana gathered all the information she could, searching online and finding more people who had a brace, watching their videos, and feeling less alone. Armed with growing knowledge and her Higgy Bear, Mariana’s unbreakable spirit gained strength. As Mariana became acquainted with the Higgy Bears organization, she decided she wanted to utilize social media and create a fundraiser for her own donation. Tracy recalls thinking it would be great if they could raise enough to purchase a handful of bears and was prepared to support Mariana’s drive.
Hailey Rinaldi saw Mariana’s fundraiser online and sent a DM to Tracy. They began a conversation and Hailey eventually told Tracy that she had also done fundraisers for Higgy Bears. Tracy was incredibly touched by Hailey’s openness and thought there was a chance the bear Mariana got was from Hailey. Mariana had initially put the bag her bear had come in aside, but knowing there were papers and pamphlets inside, Tracy told her, “There might be a letter in there from Hailey.” Hailey included a positive message with her donated bears to inspire the recipients and to offer herself as a resource and support throughout treatment. Being able to close the loop of receiving the bear and meeting the person behind it further motivated the Barbuto family. Tracy has been appreciative for Hailey’s graciousness and sees what it has done for her own child, “People are put in positions they are in because they can handle it and can empower other people,” and making the connection with Hailey brought it all full circle.
Through all of this, Mariana was starting to be concerned over how everyone in school would react to her brace. Knowing that she would likely be bombarded with questions from her peers, and likely the same ones repeatedly, Mariana decided she wanted to do a presentation to her school about scoliosis before she showed up in her brace. She brought the idea to her teachers who fully supported her, and she ended up teaching 70 6th graders about the scoliosis diagnosis and bracing treatment! It was her one way in which she could exercise control of the situation, and her peers were wonderfully receptive.
Taking control of her journey, fundraising, and working with the Higgy Bear program has been a blessing to funnel nervous energy. Reflecting on what the past few months have meant to her, Mariana says, “The brace will be gone someday, but I will look back and know how much stronger it made me.” She has turned her story into a mission for helping others, and what started as a simple idea grew to a point where in six months enough money was raised to make donations to Upstate Orthopedics, Syracuse Prosthetics and Orthotics, and clinics in Rochester, and thanks to Mariana 250 kids will have a bear because of her.
Mariana took inspiration from Hailey and includes her own message with her donations. When asked to reflect on what her own efforts have led to, Hailey says, “Knowing the bears have made a difference for her has meant the world to me, and I’m so grateful they carried out the donation project this year… it honestly just feels so full circle and means the absolute most to me that getting her bear made enough of a difference for her to find the passion and drive to donate herself and expand the project more than I ever have… I couldn’t be prouder of Mariana for donating back this year.”
Mariana says, “It’s a bear, but it helped me through a lot. It makes me feel better that I can look in the mirror and I have someone looking in the mirror with me.”
For more information on Higgy Bears, visit www.higgybears.com. To support Mariana’s journey, and receive information for future fundraising efforts, follow @scoliosisbracingwarrior on Instagram.
