Art helps inspire young girl with rare disease
Posted January 4, 2017 8:46 pm.
Last Updated January 5, 2017 12:27 pm.
This article is more than 5 years old.
She’s a budding artist hoping to paint her way to a cure.
Ilona Quassem is five years old. She lives in Mississauga and is the only person in Canada known to have a rare disease called PACS1 Syndrome. In fact, there are only 40 known cases of PACS1 in the world.
PACS1 Syndrome is a mutation of the PACS1 gene which prevents protein from reaching the brain during development. Symptoms include delayed physical and mental development and poor coordination.
Ilona’s speech is delayed and she only learned to walk last year when she was four years old. But soon after that she began taking an art class and her mother says that changed everything.
“We found out she has a voice when she’s painting,” Mahjabeen Mustofa told CityNews. She said her daughter’s motor skills are improving as well.
“If you’d told me five months ago, I would have been, ‘No, there’s no way.'”
Ilona creates art almost daily now. Sometimes her teacher will first apply masking tape to the canvas which is removed after she is done painting to reveal a surprise result.
Because PACS1 Syndrome is so rare, very little research has been done. The family is trying to raise at least $35,000 globally to fund the start of a research project, looking for cause, treatments and a cure. They will be having an art show to sell Ilona’s paintings to help raise money. The exhibit will take place at Art Square Gallery & Cafe from Jan. 23 until Feb. 26.
Ilona’s father Farhad Quassem says they will do whatever they can to help further research into this extremely rare condition.
“She’s our little turtle,” he said. “So, as long as we’re going forward, that’s the best that we can hope for.”
To see more of Ilona’s paintings or to donate, click on the following links.
