Twelve-year-old Dani Evans is legally blind, but that doesn’t stop her from ski racing, writing novels and poetry, and planning to become a human rights lawyer.
Or from running an online fundraiser for Friends of the Family during the month of May.
For her GoFundMe walkathon, Dani is walking around Nelson with George, her buddy dog – a guide dog for children – with the goal of walking 100 kilometres in 31 days. Her original plan was to raise $1,500 for the organization. But she has raised the goal to $3,000 and as of the morning of May 12, had reached it.
“I’m amazed by it,” Dani says. “I thought that I’d get $1,000 by the end of the month, but even before the walkathon started, my mom called me in and she’s like, you have $500 so far.”
Friends of the Family is non-profit organization that raises funds for families who need to travel outside of Nelson for a child’s medical needs.
The organization covered the costs of trips for Dani and her parents to specialists in Kelowna, Vancouver and Edmonton when she was nine years old and was diagnosed with Stargardt disease, a form of macular degeneration that causes the progressive deterioration of the macula, a small area in the centre of the retina in the back of the eye. The condition causes central vision loss and some loss of peripheral vision.
Dani had 20-20 vision until 2018 when she was nine.
“Then it became very apparent that there was something major happening,” she says. “I used to sit in the back of the classroom and I could still see the board. Now I’m in the very front and I still need to take pictures of it to be able to zoom in.”
Macular degeneration is a genetic disease that can become active at any point in life. Her vision deteriorated gradually after the diagnosis.
“It happened faster than the specialists thought it would,” Dani says. “And that was very scary for me.”
Recently her condition has stabilized, but it is not expected to get better and there is no cure.
Trafalgar Middle School, where Dani is in Grade 7, has provided her with a computer, an iPad, a teaching assistant, and permission for her friends to sit beside her and help her follow the lesson. She also gets help from Sofeya Devji, a teacher of blind and visually impaired students who works for the school district. Being a French Immersion student also helps, she says, because the material is often as much oral as written.
She’s committed to learning French because she thinks being bilingual will help her future career in human rights law.
“I’ve always loved having a case, having an argument, and I want to put that to a good use. So I was browsing different jobs, because I’d like to be very prepared for the future. I’m one of those people who just has to have everything all planned out.”
After she decided she wants to be a lawyer, she looked at the news and noticed how lawyers are involved in human rights issues.
“I just instantly knew that’s what I wanted to do. And I haven’t changed my mind since.”
That career choice, she says, is because she wants to make a difference, and that’s also what prompted her to create this fundraiser. She is grateful to Friends of the Family and wants to help them.
Dani takes various routes around town for her walkathon each day, sometimes down to Baker Street and back from her home in upper Uphill, always accompanied by George.
“I am not old enough yet to get a guide dog,” she says. “A buddy dog is kind of an introductory guide dog. I got George two years ago, and he’s just been amazing. He’s really nice to walk with.”
Devji is working with her on how to get around town safely, how to navigate the streets, how to tell if cars are coming.
She has a white cane if she needs it, and a monocular (a small one-eye binocular).
Dani is also learning Braille.
“I have not mastered Braille yet, but I can read sentences, which is good. And I can write paragraphs, which is good.”
Reading and writing are two of Dani’s many intense interests. She says she is currently writing three novels and she loves writing poetry. She read two of her poems to a school Remembrance Day assembly in elementary school and one of her books is part of the collection in her elementary school library.
At the Tiny Lights Festival in Ymir two years ago, Dani sang one of her own songs.
Macular degeneration has slowed down her literary ambitions a little, Dani says.
“But I’m getting used to it now. I’m just going to have to do it in a different ways.”
And then there’s ski racing, which Dani refers to as “my No. 1 thing.”
She’s a member of the Canadian Pacific Sports Institute provincial development team, which means the organization has scouted her and considers her to be a potential participant in the Paralympics.
“My dad’s my guide, so we speak through a microphone and he gives me instructions on what the slope and terrain is. We actually go through ski courses together and race together, which is amazing.”
Skiing is part of the family’s outdoor lifestyle, which has always included camping, kayaking and rock climbing, and Dani says she’s adjusting.
“To be safe, you need to be able to see. But I feel like I’ve just kind of made my way through it all. And I feel pretty comfortable right about now. And I’m really happy I can because my vision is kind of stabilizing.”
Now that her condition is levelling out, Dani says she’s getting more relaxed about it, and she’s realized that when she’s calm, it helps her vision.
Her multiple visits to specialists in big cities are not the first time the family has been helped by Friends of the Family. When her brother Alex, 9, was an infant he required emergency bowel surgery. So the family already knew what a lifesaver the organization can be.
“It’s more than just helping you get there financially,” says Dani’s mother Liz Evans. “They provide a lot of emotional support too, checking in and making sure that you’re OK, and all of those other layers that come with finding out that your child is sick.”
Dani’s fundraiser, which can be found at https://bit.ly/3vWorBK, will continue through the month of May, as will her walks around Nelson with George.