Ottawa girl, facing vision loss, to take in the City of Light
'We want that filing cabinet in her mind to be full of all sorts of memories'
Jayden Lanning is leaving on a 10-day trip Friday to see the Eiffel Tower in Paris, to gaze at the iconic landmark as its gold lights sparkle at night. If the skies are right later during a stop in Iceland, the 11-year-old Ottawa girl may also get to see the Northern Lights, too.
If she's going to go blind, Jayden wants to see the best the world has to offer.
We recognize time is precious- Belinda Lanning , Jayden's mother
Lanning's parents, Steve and Belinda, adopted Jayden as a baby, and learned when she was two months old that she was deaf.
By coincidence, Belinda Lanning is a sign language interpreter. After teaching Jayden to sign, getting her cochlear implants and intensive speech therapy, her parents thought they had things under control.
Then, when she was nine, they learned she had Usher syndrome, a condition that affects some three to six per cent of children who are deaf and leads to balance and vision issues. In the most serious cases, like Jayden's, it could lead to total blindness. There is currently no cure for Usher syndrome.
'You get choked up'
"We recognize time is precious," said Belinda Lanning. "We want that filing cabinet in her mind to be full of all sorts of memories — so that if she's faced with the future of total blindness, that she has so much to still live in her mind and see still."
Jayden has little peripheral vision. When she looks at objects up close, it's like looking through a circle the size of a golf ball. That tunnel vision could close in entirely during her teen years, her doctors say.
"You get choked up even thinking about it," said her father Steve. "It's tough … I just can't fathom really, going without your eyesight."
It seems like it would be really cool to see at night with all the lights, lighting up the entire city. Just seeing it glow.- Jayden Lanning, on Paris
It was during a heart-to-heart with her daughter not long after they learned she would likely lose her vision that Belinda asked Jayden what she wanted to see before she lost her sight, and her daughter said the Eiffel Tower.
"I thought that was amazing," said Belinda. "I would have not expected she would have said that. It blew me away."
Jayden is a creative preteen who loves to draw in vivid colours, is interested in fashion, and often gets lost in a good book. Paris is a place she's read all about.
"I thought it'd be a really interesting place to see," said Jayden of Paris.
"It seems like it would be really cool to see at night with all the lights, lighting up the entire city. Just seeing it glow."
When Jayden's school, church and friends learned about her wish, they rallied to turn her dream into a reality.
The Ottawa Christian School threw a Paris-themed movie night where kids ate popcorn and parents went out for a date night.
The school also helped bake more than 150 pies to raise money with the Barrhaven Fellowship church the Lannings attend. A crowd-funding campaign brought in more support from friends, family, even strangers around the world.
Six months later, the community raised more than $15,000 for the Lannings' one-of-a-kind trip.
"I feel like it's really kind and generous," said Jayden. "It's so special, because lots of people planned it all out for us."
Northern lights in Iceland
The Lannings will travel Paris for a week to gaze at the Eiffel Tower at day and night and take in the other sights.
We have lots of dreams for her and those dreams haven't changed.- Belinda Lanning
On the way home, they're stopping over in Iceland with hopes Jayden and her six-year-old sister Alena will see another spectacular light show.
"They say in Iceland the Northern Lights light up the sky with colour," said Steve. "That's what we want her to see."
Steve Lanning said during the day Jayden has been incredibly strong. It's only every few months at night, when her implants are off and she can't hear, that she voices her fears and sometimes calls out to her parents.
"Sometimes it's just a question — am I ever going to be able to drive?" said Belinda. "Sometimes it's just — I'm scared I'm going blind and not going to be able to do things other kids can do. Sometimes it's just needing an extra hug."
Since Jayden can't hear at night, her parents write back and forth to her on an erasable dry board. Message after message, they calm her fears.
No matter what happens next, Jayden's family wants her to keep positive.
"She's always going to be surrounded by love no matter what," said Belinda. "We have lots of dreams for her and those dreams haven't changed.
"She's been through a lot and keeps smiling. She has a lot going for her no matter what happens."