The Ride for a Friend organizers and hard working volunteers would like to introduce you to Ky!
Ky was born premature, at 33 weeks and 6 days, on international Pi day (March 14th, 2015) at an astonishingly massive 4lbs 11oz. Noticeably in distress, she was rushed over to the neonatal intensive care unit for monitoring, where she was diagnosed with gram-negative E.coli meningitis – an infection of the surrounding membrane of the brain (the meninges), and the brain itself. By the end her first day, her condition had worsened and she was transferred by air ambulance to Toronto Sick Kids Hospital. She was intubated for inability to breathe and remained in a medically induced coma while the medications and antibiotics did their work fighting off the infection. Ky spent her 1st year heading back and forth to the hospital to battle parainfluenza, urinary tract infections, pneumonia, and undergoing to test and procedures to further diagnose all of her challenges.
Ky will likely never walk due to her inability to move her lower body, coupled with her severe hip dysplasia. Her permanent brain damage due to the E.coli meningitis at birth has caused her significant developmental delays and left her prone to epileptic activity. She was diagnosed with hemiplegia – cerebral palsy mainly affecting her right side and requires a very rigorous stretch routine to ease her spasticity. She can’t eat by mouth due to the aspiration, so she eats through her G tube with her feeding pump. She can’t form words, and she can’t tell you with words what she wants or if something is bothering her, but she’s one of the happiest kids you’ll ever meet. She’s always laughing, smiling, giggling, or finding some way to have fun or make you laugh. She loves to vocalize and make all kinds of noises. She might not be able to tell you something in words, but she can definitely get her point across with her body language. She loves to play with her iPad and launch her toys across the room from her wheelchair tray, and thinks it’s hilarious when you vent the excess air from her G tube and it makes noise. She loves to go fast in her wheelchair, play with her hair every chance she gets, and help push the button that makes her hospital bed go up and down.
Ky lives with Dad, Richard, in Sudbury where he works as a highway designer for a local engineering consulting firm. Grandma watches Ky most days while Richard is at work. Richard still has to take a lot of time away from work for appointments but thanks to the support of his family, he’s able to make it work.
Ky operates at roughly the same capacity as a 4-6-month-old, so there’s a lot of things she doesn’t understand, and it makes it quite a challenge to find toys that can keep her occupied. She loves to chew on things, whether it’s a toy or her hand, but since she has teeth it’s hard to find things she can chew on that she won’t rip apart and swallow. She loves to watch Rugrats and Arthur on her iPad, and play with her different piano toys, especially when you take turns hitting the buttons.
Now that Ky is getting much bigger and a little older, she’s beginning to get a lot more difficult to move. It’s mostly manageable right now at her size, but in another year or two she’ll likely break 70-80lbs and will require a lift to help with transfers. It’s our hope, that through Ride for a Friend, Richard may be able to get Ky that lift or one of the many other assistive devices or service she’s going to need.
We hope you’ll join us again this year, or for the first time, to help support a local family. Of course we expect to have a great time doing it!
