The Paintbrush is Mightier than the Disease

By Farhad Quassem and Mahjabeen Mustofa

IIlona Summer Quassem is a very friendly, affectionate, happy little girl who can make the grumpiest person smile with joy! She absolutely LOVES painting, dancing and being outdoors. At the tender age of five, she is already a brilliant artist despite her diagnosis with an extremely rare disease. In fact, it is through her artwork that she has truly begun to unlock her potential. As with all of life's lovely miracles, however, there still are challenges to overcome.

Taking travel risks

Ilona's Difficult Diagnosis Revealed Mutation in PACS1 Gene

She was born in 2011 complication-free. Soon after, we noticed she was too weak to feed, and avoided contact with "strange" surfaces, even toys. At seven months, she hadn't hit any milestones and barely held her head up. She was diagnosed with excess fluid around her brain, and had to be tested for pressure on her eyes. That's when we found out she needed glasses and the roller coaster ride started.

By her first birthday, she had a team of a dozen specialist doctors and therapists in three hospitals and four therapy centres. Ilona was poked, prodded, and tested over and over. The results were all "normal, but not quite… and we don't know why…" We realized that this was uncharted territory for the medical community and we had to take charge of her diagnosis and treatment.

Ilona, 5-year old artist

After switching out some specialists, right after her second birthday, she got into a research program at SickKids Hospital for Whole Genome Sequencing. Eight months later, we had an answer. She had a mutation in the PACS1 gene, the first and only case in Canada. Through Facebook we found other families around the globe, and our little community is about 40-strong as of November 2016.

With continued therapies, Ilona is making progress every day, slowly but surely. She started crawling at two, walking at four, and at five she now has just over 150 words. We didn't know if she would ever HOLD a brush, but here she is today!

Ilona's Art Catapults her Development

After she began walking, we enrolled Ilona in an art class. We still can't believe what happened next.  It was as though the creative juices that fueled her painting and self-expression activated other areas of development.

She began to talk, first to identify colors, then especially to let us know if we gave her the wrong color. Then, to our joy and amazement, other words began to tumble out of her mouth. Her motor skills drastically improved as well.

She paints almost daily and began to amass quite a few masterpieces. Her beautiful creations on canvas gave us an idea.

Ilona, 5-year old artist

Ilona's Art Show Will Raise Money for Research


Very little research has been done on PACS1 Syndrome because it is so rare. We hope to change that for our daughter and her friends around the world.

We are working to raise $35,000 to kickstart a research project that we hope will unearth the cause, treatments and cure for PACS1 Syndrome. There will be an art show showcasing Ilona's paintings at Art Square Gallery & Cafe from Jan. 23 until Feb. 26. The money raised from the sale of her paintings will fund new research.

You can help by spreading the word and telling a friend, and by donating to the PACS1 research fund at National Organization for Rare Disorders by going to donate.pacs1.info. Read more about Ilona at her unique friends at www.pacs1.info

Ilona, painting a massive and beautiful picture

About the Authors:

Farhad Quassem and Mahjabeen Mustofa are the loving father and fearless mother of a very special girl with unique challenges yet tremendous possibilities. For more information on Ilona's upcoming art exhibition, visit her Facebook event page.

 

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