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Hey! I'm not giving up today. There's nothing getting in my way. And if you knock knock me over. I will get back up again. If something goes a little wrong. Well you can go ahead and bring it on. Cause if you knock knock me over, I will get back up again", truer lyrics could not be found to describe the resilient spirit of the patient from our most recent room transformation…these words from the movie “Trolls “rang loud and true through the hallways of 9B as the Pattyn Project rolled in on a sunny Saturday morning to spend time with, a 6-year-old Bone Marrow Transplant patient named Olivia. Olivia recently traveled to Children’s Hospital of Pittsburgh of UPMC from Decatur, Georgia along with her wonderful parents Yvonne and Dave, in order to seek treatment for a rare neurological disorder she was born with called Metachromatic Leukodystrophy (MLD). After realizing their home medical community offered little to combat Olivia's disease; they refused to give up hope and sought out a consultation with Dr. Escolar, who is internationally recognized for her work with Neurological Development in Rare Disorders. Upon meeting her, it became clear that Pittsburgh was where Olivia needed to be for treatment.
Olivia, with a head full of crazy curls was bright and engaging from the moment we met her. She shared some of her interests including her love for Trolls, Rainbows, music and art. We got right to work incorporating these cheerful ideas together to create her the perfect new room to enjoy, while she faces her long, but hopeful road ahead. A purple and pink comforter immediately brightened her room, as did all things "Poppy", the main Troll character. Her room included “Poppy” the stuffed animal, character light, and blanket with the perfect words for the occasion” Be true to you”. Our personal favorite addition to the room came in the form of a Troll themed tent, and it seemed that Olivia was in agreement. She immediately chose to get out of her bed and spend time in the tent, which is a huge feat for a child who has just had a Bone Marrow Transplant earlier in the week. The tent proved very versatile. Because it lacked a bottom, it could even be placed over top of her whenever she climbed in and out of bed. It provided her the opportunity to create a space for herself within the confines of her hospital room. This was a truly special sight to see, and the type of control we continually strive to provide for these kids.
The smiles on the faces of Olivia and her parents collectively lit the room with hope. Olivia also dove right in and treated us all to a musical performance, as she sang multiple songs from her new light up microphone complete with speakers to play soundtracks from her favorite movies. We all were moved hearing her belt her favorite song, “Get Back Up Again” from the Trolls movie, as little Olivia embodied every beautiful message in that song with her strength in that moment. The remainder of our time was spent dressing up in some of the dance costumes, reading books in the tent, setting up her easel and completing a paint your own wand art project that we had brought along to appeal to her creative nature.
It was truly special to witness Olivia reclaiming the parts of herself while her parents looked on and enjoyed watching her shine. We ended our time by snapping a few family photos with Olivia perched on her new pink chair under her new brightly colored sign. We feel overwhelmed with gratitude for the opportunity to meet such a special little girl. Every room is unique and special, but this room has helped to light a new fire in all our hearts to continue to reach out to as many patients as possible with The Pattyn Project. It is such a privilege to come alongside children facing similar medical challenges. Thank you to everyone who has shown us ongoing support, as well as new friends who have expressed interest in helping us, as we pursue this passion. We couldn’t do it without you! We hope you all will continue to consider donating to this special cause, as we endeavor to lift the spirits of young fighters like Olivia. We ask that you all keep Olivia and her family in your thoughts and prayers during the remainder of her stay in the hospital. Going forward, we hope for persistent progress, a smooth transition to their time at the Ronald McDonald House, and eventual transfer home. Thank You Olivia!