Learning a child has been diagnosed with any sort of life-altering condition can be pure agony for a parent.

However, the worry and concern is magnified when it's as rare as PACS1 Syndrome, a genetic mutation that causes impaired motor, cognitive and verbal skills and those living with it often have difficulty walking, talking, eating or drinking and learning.

Mississauga's Ilona Quassem, 5, was diagnosed with it in 2014 and 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 on PACS1 available to them.

"It's terrifying (initially)," Quassem told the News from the family's Meadowvale home.

When their daughter wasn't rolling over by six months, the couple knew something was amiss and 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?"

After the diagnosis, it didn't get any easier as there was little information available to the concerned parents. However, the family found others online who also had children diagnosed with PACS1.

Last year, 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 say, since starting the art classes in the summer, 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.