The birth of a new daughter is supposed to be a blessing.
And for an Orillia family it was on March 4, when Jade and Ryan Dowling welcomed Rylee, their second daughter, into their family.
But, within 24 hours, their lives were “completely turned upside down.”
Rylee was rushed to SickKids Hospital in Toronto, where she has spent the past six weeks, undergoing extensive tests to try to determine why she has been involuntarily seizing.
A CPAP machine has been required to help Rylee breathe and a feeding tube has been used to ensure she gets the nourishment her little body needs.
Various medications have been tried to stop the multiple seizures that occur each day.
After many tests, it’s been determined Rylee has a rare form of progressive Epilepsy called ‘OHTAHARA Syndrome’.
This Epilepsy is characterized by many hard-to-control seizures and delays in physical and cognitive development. It’s expected she will never be seizure-free.
The medical staff at SickKids are currently trying a variety of anti-epileptic drugs, hoping to control as many seizures as they can.
They are hoping to soon begin occupational therapy to help her learn basic skills such as swallowing and feeding.
To make matters worse, COVID-19 means the hospital only permits one parent to see Rylee at a time.
Since Day 1, Rylee’s mom, Jade, has been by her daughter’s side, while Ryan stays home in Orillia with their other daughter, Logan.
“Ryan and Logan make frequent trips to Toronto to see Jade and support each other as a family,” says Meaghan Osborne, a family friend who has created a Gofundme account to aid the family.
“In the short term, donations you make will be used to help cover the day-to-day costs such as hotel stay, travel, parking and meals,” Osborne said of the account.
In addition, contributions will be used for Rylee’s future care: medical costs, in-home medical equipment , accessibility products, resources, therapy, uninsured medication and much more.
“The Dowling family has a long road ahead,” said Osborne, who has been gratified to see people support the Orillia family.
To date, more than $56,000 has been contributed to the account. It’s heartwarming to see, said Rylee’s mom.
“Thank you is a phrase that is used for something as small as someone holding the door open for you. I wish there was a phrase stronger to show our appreciation for everyone’s love and support,” said Jade Dowling.
Click here to donate.
