Big garage sale fundraiser Saturday
Mielle Gonzalez’s ordeal began with a rash that lasted for months, her mother, Suzy Clement, says. Not long after she entered kindergarten, in 2007, she developed pain and weakness in her legs that became so severe she couldn’t walk up the stairs in her home, and would have to crawl to a piece of furniture to stand herself up.
A doctor took one look at Mielle that Halloween and offered a name for her frightening condition: juvenile dermatomyositis, a rare immune system disease that affects about 5,000 children in the United States. But he offered Clement and her husband, Lenny Gonzalez, few clues about the trials ahead – trials that have included a dizzying progression of toxic treatments that would leave Mielle by turns bloated, sick and in the throes of severe, medicine-induced mood swings, and a relapse this spring that caused more muscle weakness and pain.
“My daughter said her brain wants to explode and beat somebody up,” Clement says, citing the effects of the steroid prednisone, one of the treatments doctors are using to try to battle the disease into remission.
About a third of the children who contract the disease – which causes muscle weakness and pain, severe fatigue, rashes and digestive, lung and heart problems – go into remission permanently, while a third experience relapses at some point. Relapses can be triggered by something as simple as a sunburn.
A third battle the disease their entire life, and complications caused by the disease can be fatal. It has no known cure.
Fortunately, the family has friends working to help them out. They’ve got the support of another family living just around the corner whose daughter has the same rare disease, something Clement calls an “outrageous coincidence” which leads her to wonder if there may be an environmental cause for the disease. “There’s so much they don’t know (about the disease),” Clement says.
This Saturday, about 30 families are holding a garage sale to raise money for research to fight the disease and to help Mielle’s family pay her medical bills. The family is taking Mielle to Chicago to consult with one of the country’s top experts on the disease next month.
The sale is from 10 a.m. to 4 p.m. Saturday at 1514 Bay Street. They’ll have loads of baby and kids items, furniture, bikes, clothes and more. There will also be lemonade and live music. (The couple, both professional photographers, will be taking pictures of the event, too.) If you can’t make the sale but want to help, you can donate to the organization working for a cure for this disease, Cure JM, by clicking here.