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This Past Sunday on a blustery afternoon, the Pattyn Project descended on 9B to transform a
couple of rooms and spread hope to two very deserving patients. Up first was a smiley,
princess loving three-year- old named Jade who was recently diagnosed with a rare genetic
condition called Krabbe disease. Her family heard about the Pattyn Project from another
patient…our Troll loving friend Olivia whose parents shared their experience of having their
daughter’s room transformed. Olivia and Jade’s families have gotten to know each other while
seeking treatment for their daughters at Children’ Hospital of Pittsburgh of UPMC.
It turns out that these two sweet girls share a similar diagnosis. Both suffer from different forms of leukodystrophy, inherited genetic conditions that affect their ability to grow or maintain myelin, which leads to neurological degeneration. On October 29 th , Jade and her lovey parents Brenda and Roge (pronounced Ro-Hay) flew from Denver, Colorado to consult with Dr. Escolar, who is recognized internationally for her work with rare neurological conditions. From that visit, it was determined that Jade would undergo a Bone Marrow transplant on November 25 th , in hopes of halting the progression of the disease.
Knowing that BMT patients are confined to their rooms for weeks at a time following their transplants, we were eager to help Jade reclaim her space, by filling her hospital room with familiar things that remind her of home. On our initial visit, we learned that Jade loves to paint and enjoys playing with babies, tea sets, and anything to do with princesses. Keeping her wish list in mind in mind, we rolled up with a wagon overflowing with all her favorite things to help personalize her space.
When we first arrived, Jade was having a rough morning; however, she recovered quickly and greeted us with one of her infectious smiles. We were thrilled to see such a wonderful support system in place for this little trooper. Friends, Steph and Mike had driven 13 hours from Omaha, Nebraska to lend moral support and to help Brenda and Roge get acclimated to their new surroundings, in preparation for Jade’s transplant. They were the sweetest and jumped right in to help with attaching Jade’s new princess tent to her bed.
Jade was absolutely precious and so polite thanking us for each new sparkly addition to her room. We hung a mural with her favorite princess Cinderella and name spelled out in her two favorite colors purple and green. A pink comforter with a host of princesses added a nice splash of color to her room. Mom seemed very excited about the addition of the easel for painting projects, and grateful for a gift card to target to use for necessities during their stay.
After a nice visit, we excused ourselves to give mom and dad a chance to freshen up, and we headed down the hall to tackle our second room for the day. We stopped by to check in on Jade later in the day, and it warmed our hearts to see her hanging out in her princess tent with her dad. We took a few more pictures with her family and headed on our way. 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 our passion. We couldn’t do it without you! We hope you all will consider donating to this special cause, as we endeavor to lift the spirits of brave little warriors like Jade. We wish nothing but the best for this sweet little cherub and ask that you keep Jade 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 for their time at the Ronald McDonald House, and eventual travel back home to Denver. Thank you Jade!