Images: Juliette Drysdale
Eilish Wilkes was only two when a cancerous brain tumour robbed her of her sight. Surgery for the condition, rare in children so young, was unable to remove most of the tumour and doctors predicted that Hamilton-base Eilish wouldn’t make it to her fifth birthday.
But Eilish is a fighter. Not only did the 27-year-old refuse to let visual impairment and the excruciating pain she still suffers from get in the way of living a full life, but she also went to bat for other disabled Kiwis.
“I’ve volunteered since I was eight, collecting food from bakeries and delivering it to families at Starship Hospital’s oncology ward,” says Eilish.
“I’ve also volunteered for Blind Low Vision NZ, the Cancer Society and the Child Cancer Foundation. Today, I work 20 hours a week for disability organisation My Life My Voice.
“I’ve always been passionate about making a difference in the lives of others, and if I can help people avoid some of the challenges and suffering that I’ve had to go through, then that’s what I want to do.’’
Auckland-born Eilish is completely blind in her left eye but can identify shapes and colours in her right eye. The cancer has left her with extreme daily pain and headaches, nausea, fatigue and even difficulty regulating her body temperature. “It can feel like I’m on fire in summer and absolutely frozen in winter.”
It’s also meant Eilish, who finished high school by correspondence, missed out on many of life’s milestones, such as getting her driver’s licence and doing an OE.
“I have to take a lot of medication and rely on others for support, which many people my age don’t have to.”
Getting her first guide dog, a black Labrador named Loie, when she was 19 was a game changer.
“My family’s always had dogs and I’m absolutely dog nuts! After getting Loie, I went from depending every day on a sighted person to being completely independent. Previously, if I wanted to go to the shops, I’d have to ask someone to take me there. But with Loie, I was able to go to the mall, the post office or a café, and have the freedom and independence that no sighted person could give me.”
Three years ago, however, tragedy struck when Eilish’s pain levels increased and she was diagnosed with a second brain tumour. Because of its position in her brain, the second tumour was unable to be operated on, or treated with chemotherapy or radiation therapy.
“I cried and cried my eyes out when they told me,” says Eilish. “I went through a grieving process, but then I decided that the stress and anxiety of worrying about dying wasn’t helping me, so I’ve chosen not to focus on it.”
While her health condition necessitated a move from Taupō to Hamilton with her parents Pat and Kathie, so she could access better medical care, Eilish has never faltered in her tireless mission of advocating for disabled Kiwis. She’s hoping to repeat her success in the 2017 Auckland Marathon, when, supported by her father, she and Loie ran 5km, raising $2500 for guide dogs.
After successfully completing an online creative writing course, Eilish published a book, Hospital Happenings, which helps to demystify the medical system for sick kids.
“I wanted to break down what happens during hospital visits to make it less scary for children because, as a child, the many hospital visits were frightening for me at times.”
Its success spurred her on to complete additional manuscripts, including one about guide dogs, but Eilish hasn’t yet found the time to publish them. When she’s not working or volunteering, Eilish is a passionate crafter, making greeting cards and soft toys she sells via Facebook.
“I’ve been scrapbooking and making things since I was 12, including upcycling furniture. I’ve gradually built up my knowledge, and share tips and tricks with others on Facebook.”
Last year, Eilish suffered yet another setback when her beloved guide dog Loie had to be retired.
“Loie was getting older and starting to suffer from arthritis, which was heartbreaking for both of us. Thankfully, he’s still able to live with me and have a nice retirement.”
And Eilish only had to wait a few months for a new guide dog, with two-year-old Huia filling the enormous gap left by her predecessor.
“Huia is funny and quirky – she’s my big goofball!” enthuses Eilish. “The difference a guide dog in my life makes is immeasurable. Not only does it help to get me through every day, but people also react with warmth and affection when Huia is around. They want to know all about her.”
Blind Low Vision NZ’s guide dog puppy appeal is on 20 March. To donate, look for collectors or visit blindlowvision.org.nz.
