When my daughter was at her worst, overwhelmed by the mental, physical and emotional effects of many medications in addition to the pain and restrictions that her illness caused, she spent a lot of time making art. Necessitated by the fact that she could not move around much, she found sedentary activities like knitting, beading and drawing, engaging and comforting. At one point in her healing process we held a fundraiser to support research and a cure for her rare illness. She made many beaded bracelets and necklaces to sell at the fundraiser (which was mostly a large concert event) and found that she sold out! She discovered an entrepreneurial spirit and an ability to make a difference simultaneously.
I have found over the past few years that this is not such an unusual approach for kids with a life threatening or chronic illness, to take. Spurred on by the need to “do something” to find cures for their illnesses, and by their parents support (and like-minded need), many children are finding creative means for healing and fundraising.
This is the first in a series of brief profiles of kids making art (with heart). Kory is 10 years old now and has been struggling with the ups and downs of a rare autoimmune disease called Juvenile Myositis for 6 years. At her worst, she couldn’t walk, get up off the floor, brush her hair or teeth, or ride a bicycle. She had stopped playing with her older sister too. She was tired and weak.
Kory lives in a sunny part of the US and loved to be outdoors. Because one of the known triggers of her illness is exposure to UV rays and this, along with the fact that the medications she’s on make her even more sun sensitive, she is not allowed to be in the direct sun. She needs to stay covered up and wear sunscreen when she is outdoors. While there is treatment for her illness, and she is now able to ride a horse, a bike, run, play and wash clothes by hand, there is not yet a cure. And Kory would very much like for there to be a cure. For herself and other children she has met with this same illness.
Kory paints, sketches, draws and doodles. She has been inspired by other JM kids to sell her artwork.
Now she makes candles and photo holders to sell. She makes bookmarks too, and offers them in exchange for donations to Cure JM at local farmer’s markets. Her older sister also helps in this endeavor. She wants to do more artwork and keep selling so she can contribute to the search for a cure.
When I asked her what the best thing about her project is she said, “it helps raise awareness and hope.” And when I asked in writing, what she wanted others to know about herself or this project, she wrote, “no matter how small the person or [the] project is, it counts !” That was her exclamation point and I couldn’t have said it better myself.