By Chris Clay
When Mississauga’s Ilona Quassem, 6, was diagnosed with PACS1 Syndrome in 2014, her parents Farhad Quassem and Mahjabeen Mustofa eventually learned their daughter was one of only a few dozen cases worldwide. Making things even more frustrating and uncertain was the fact there was little information available on PACS1 available to them.
Noticing their daughter wasn’t rolling over by six months, the couple took Ilona to a number of specialists where she underwent a battery of tests. Quassem said as conditions and diseases they had heard of were eliminated, there was an initial sense of relief but that quickly vanished because “if it’s not this, what is it?”
In 2016, the couple decided to enrol Ilona in art classes through their friend Anzira Rahman’s school to help her develop her motor skills. What they’ve seen from their daughter since then has amazed them. “When she started, she couldn’t hold a pencil,” said Mustofa. “Now she can hold a brush and hold a pencil to write and colour.” They also say that since starting the art classes, her vocabulary has expanded dramatically. She now asks for the colours she wants to paint with and started associating colours with objects. For example she would call an apple the word “red” until she was able to say “apple.” She also learned other words, as well as concepts such as shapes from painting.
Her parents say Ilona’s ability to associate words across multiple contexts improved significantly after she began taking the classes and her mother says Ilona is very focused during her painting, when a limited attention span isn’t unusual for any child at that age.
“To us, each tiny thing is a huge milestone,” said Quassem, adding his daughter has blossomed since taking the art classes.
“It’s all very emotional for me because I didn’t know if she would ever talk,” said Mustofa.
Some of the art Ilona created was exhibited last year at the Art Square Cafe and Gallery with a special reception. The exhibit was designed to raise awareness about the syndrome and to help reach a goal of raising $35,000 to fund research into PACS1.
Chris Clay is a staff reporter with The Mississauga News and The Brampton Guardian.
Reprinted with permission from Mississauga.com
What is PACS1 Syndrome?
It is a rare genetic mutation that causes impaired motor, cognitive and verbal skills. Those living with PACS1 often have difficulty with movement and balance, speech, learning, and chewing or swallowing.