Adding Color to Care
Meet Anna, Cook Children's 2022 Children's Miracle Network Hospitals Patient Ambassador. She will represent Cook Children's by sharing the story of her journey and the incredible care that she continues to receive here on a regular basis.
Anna spent six months in pain, while her parents searched for answers. They tried everything they could to get their daughter well.
"She itched so bad that we had to put ice packs on her legs just to get her to sleep," explained Heather, Anna's mother. "Her stomach hurt so bad that she would be writhing on the floor in pain. We didn't know what it was. We thought it was a gluten allergy or something she was eating, so we tried eliminating certain foods. We tried everything."
Doctors told Anna's parents she was experiencing allergies and eczema, but Heather knew that it was something more. In May 2019, she brought Anna to the Emergency Department at Cook Children's. She was referred to one of our rheumatologists, Ricardo Guirola, M.D., who immediately diagnosed her with systemic sclerosis.
Systemic sclerosis is a rare disorder that causes Anna's immune system to attack her own body. Like other patients with this diagnosis, Anna's body produces an excess of collagen, which causes a hardening and tightening of patches of skin, and she also experiences stomach pain. Thankfully, tests have shown that her heart and lungs are not affected.
Anna's road to recovery began with regular visits to several Cook Children's specialists, as well as physical and occupational therapy.
"She had so much fun," Heather remembered with a smile. "I mean, it was still hard. When she first started, she couldn't get up from sitting on the floor. She went from being a ballerina to not being able to get up without having to hold on to something."
Anna visits Cook Children's once a month for an intravenous immunoglobulin infusion, which takes about six hours each time. This helps her weakened immune system fight off infections. She'll need to get an infusion on a monthly basis for the rest of her life, unless a cure or other treatment is discovered.
"She likes coming here, even for her infusions, even more so with COVID because it gets her out of the house and away from her sister," joked Heather. "And she gets to see people. She likes being around people that, she says, understand what it's like to have something that makes them different."
Art is such an important part of Anna's trips to Cook Children's that she wanted to make sure there were enough art supplies to go around. She organized a donation drive for coloring books, crayons, markers, paint and other supplies. By engaging her neighbors, she was able to collect hundreds of items that were donated to the Child Life Department. Anna also used some of her own birthday money to gift our Sit…Stay…PLAY facility dogs with some dog treats, which she brought to one of her infusion appointments. Our dogs were a great source of support for her during a challenging time in her life. They hold such a special place in her heart that her family got their own Goldendoodle named Dolly.