Meet Madeline – Fort Wayne IN – Age 12
As we all hunker down for winter in a pandemic year, many of us are searching for indoor activities to keep us busy. Madeline Dean has the answer: Play music! Lots of music!
Madeline, 12, from Ft. Wayne, Indiana, plays the ukulele, guitar, piano, and kalimba (thumb piano). She also sings. And if those don’t keep her busy enough, she will soon begin violin lessons.
Madeline’s creative spirit has filled her pandemic schedule with music, drawing, and painting, all while she copes with a disease that can keep her inside and not able to do the physical activities that her peers can.
When Madeline was 3, her parents, Angela and Matthew, noticed that she was having issues climbing stairs, and it was hard for her to get food down.
Her pediatrician ordered some tests, and they quickly had an answer: juvenile dermatomyositis, an autoimmune disease that affects muscle, skin, and small blood vessels in children. The primary symptoms are muscle weakness and skin rashes due to inflammation from an overactive immune system.
In the years since her diagnosis, Madeline and her family have learned to steer clear of things that can trigger her symptoms. “Probably some of the hardest times are during summer or spring, really whenever the sun is really strong, because I can’t play outside from 9 to 5,” says Madeline. “The sun is so strong, even sunscreen can’t protect me from the UV rays.”
But some symptoms she can’t avoid, such as muscle weakness. “When I’m in one of my weaker states, it’s hard for me to do certain activities because I get tired quicker than other people so that can be hard to work around,” says Madeline.
“We try to expose her to as much as possible,” her mom, Angela, says. “We try to find activities that don’t use a lot of physical effort because her muscles sometimes don’t work.”
One of their more recent activities was joining A Kid Again in February 2020. After attending a Riley Hospital for Children event with Messer Construction in Indianapolis, Messer reached out to share information about A Kid Again with Madeline’s family. Although they haven’t been able to attend any events due to the pandemic, Madeline did receive a box of at-home activities from the organization.
“It was right around my infusions, and I couldn’t do a lot of things,” says Madeline. “That did help keep me busy and from going crazy during quarantine.”
Although Madeline’s disease can be like a rollercoaster, full of ups and downs, her family looks for the bright side in everything. “We always try to find the joy, always look for things that make us happy, and our faith plays a huge role in everything,” Angela says. “So we know that for everything that happens, God has a plan and we just trust Him and go with the flow.”