Achi news desk-
A groundbreaking discovery made by doctors at the Montreal Children’s Hospital about the causes of certain types of Cerebral Palsy (CP) is giving one West Island family new hope.
Siena Zakaria is as happy and playful as any 18-month-old girl, but at six months old, her parents say they started to notice she wasn’t hitting her milestones.
“She wasn’t rolling. She couldn’t support the weight of her head, a kind of lack of focus,” said her father Nash Zakaria. “She couldn’t focus on our voice.”
Doctors determined she had a form of CP, a developmental disorder that affects her movement.
“Cerebral Palsy is the most common cause of physical disability in childhood, and for the longest time, the common belief was that it was caused by asphyxia at birth,” said Dr. Maryam Oskoui, chief of Neurology at the Montreal Children’s Hospital. , and co-author of a groundbreaking study that shows there is more to the story.
“We looked to see if there was a genetic cause that could explain part of their clinical presentation,” said Oskoui.
In many cases, including Siena’s, the cause of the disorder was actually a genetic mutation.
“It’s always good to know,” said her father. “It gives you some kind of relief, I guess. In the end, there’s nothing that can be done about it at the moment, but we’re hopeful that the future holds something positive for us.”
Oskoui said the discovery could open the door to the development of new gene therapies, but there are also short-term benefits, as no two cases of cerebral palsy are the same.
“Cerebral Palsy is a spectrum disorder. Absolutely,” said Oskoui. “If you’ve met one child with Cerebral Palsy, you’ve met one child with Cerebral Palsy.”
How the disorder is treated depends on the individual case and understanding the role that genetics plays will allow better and more personalized care.
“This is where we need precision medicine and an individualized approach to really approach what affects their daily life,” Oskoui said.
Already, through physio and occupational therapy, Siena has gained a lot of strength.
“She has been able to hold her head much better than when she was younger with some minor support,” said Nash Zakaria. “She can sit up like this, but it is always supported with help.”
Her parents say it’s comforting to know Siena’s doctors are at the forefront of understanding her condition, but they say it’s been a difficult journey so far.
“She’s here, she’s beautiful, she’s happy, she’s smiling,” said her mother Shana Meo. “It’s an added worry of not knowing if she’s ever going to be able to walk, is she ever going to be able to talk?”
“No one wants to think their child is perfect,” Nash said. “It has been difficult, but it will continue to be difficult. But the support system of family, friends, everyone has been there for us. We are very grateful. We are grateful. And as I told us, she perfect.”
