On a Friday afternoon in Cochrane the McDonald family gathered in the kitchen after another busy week.
The house smells of freshly baked chocolate chip muffins and the delicious evidence can be found on four-year-old Violet and her baby sister Freya’s faces.
Mom, Laura, cleans them up and they laugh. Violet helps clean up the table with a big smile. She wears purple and proudly shows off her crayon of the same colour. It is also her favourite colour – appropriate given her name.
She is bubbly and friendly, silly and playful — but it wasn’t always this way.
Violet was born functionally blind and with a hearing impairment, living as Laura described, in a dark and quiet world, scared of anyone who wasn’t her mother, father or sister and physically shaking when other kids would walk by her.
“We just thought this little person is so scared of the world. Where does this go? What is the quality of life here when you trust three people and everyone else she is terrified of?” said Laura.
Violet’s quality of life did change with a revolutionary one-of-a-kind surgery performed at the Alberta Children’s Hospital. It allowed Violet to be able to see her surroundings, allowing her to be a little less terrified of the world.
“She can see her friends. She reads books. She is learning signs. She watches (the movie) Frozen – as often as possible,” laughed Laura. “All those good things that a blind child couldn’t do.”
Now Violet is the Alberta Children’s Hospital Foundation Child Ambassador, sharing her story and representing 87,000 kids and families helped by the hospital each year. It is part of the Children’s Miracle Network Champions program presented by Wal-Mart.
“When they mention what it is really about is showing the advancement about technology, it totally makes sense,” said Violet’s father Trevor. “I had a big smile on my face.”
Laura said that the condition Violet has is undiagnosed and that during her pregnancy it went from one worry to another.
When Violet was born they discovered that she had very different and very severe conditions in each eye – but opposite conditions, explained Laura.
The iris in her left eye had what is called coloboma, a condition where the iris is unable to close. Laura described it as having the shape of a cat eye, or a teardrop pupil, and said that when it is severe it can cause blindness, but they believed with Violet that it was an aesthetic issue.
Laura said they had always called the left eye her “good eye”, but later discovered it actually had a negative seven prescription.
In Violet’s right eye was a cataract that left her virtually blind on that side.
In addition, it was detected right at birth that Violet was deaf in her right ear. Even though she is only deaf on one side, both of her ears were full of fluid. Because her canals are tiny, Laura said it was like she was underwater in her one good ear.
“We have so many photos of her in the first two years of her life with patches on her eye,” said Laura, discussing early surgeries.
She described a surgery at around 11 months to re-attach Violet’s retina, and Violet was not allowed to sleep on her back for several weeks during her recovery.
“Babies that age have to sleep on their back, it’s the safest way. I remember going into her room every 30 minutes for 24 hours and Trevor would create this engineering accomplishment with pillows and blankets,” said Laura. “She has been through a lot.”
Dr. Astle is the director of the Guru Nanak Dev Ji Vision Clinic at the Alberta Children’s Hospital and helped make the world a bit brighter for Violet.
He proposed the one-of-a-kind surgery to the McDonalds, that as Laura described no one else has ever had, a surgery Dr. Astle invented.
The surgery involved sewing a lens into Violet’s right eye and floating an additional lens on top of that lens – adding strength to the eye. On the left side, Violet wears a glass contact that can be taken out, improving her vision.
“I remember the week before the surgery I couldn’t think about anything else. I just kept picturing the physical act of her little eye on the table, but it was amazing. He did such a good job,” said Laura.
Laura said that Violet would receive pretty intense ophthalmology care probably for a long time, with Dr. Astle monitoring the prescription that he had implanted in that eye, adding that some day he may need to put a different floating lens in.
“It wasn’t immediate, because the brain had already stopped communicating with that eye.” said Laura of the vast changes she has seen in Violet. “Once images started coming through with her right eye, it is kind of a slow build all of the time. We see a huge change.”
It was announced in spring that Violet would be the Champion Child for 2014/2015.
Violet is the youngest of all of the ambassadors in the country, and Laura said she knows that she got to go to a big party that was in her honour and that she gets to go to Disney World in November, where all of the Champion Children of North America get together.
Laura said when they called with the news she was at Wal-Mart in the patio furniture section and was so moved that she started crying sitting in one of the store’s patio sets.
She said the experience has changed their lives.
“It was so nice to have a child who starts her life so withdrawn and only you really know who she is and what she is capable of. To have this group of people go ‘we see her for who she really is and we want her to represent all of us,’” she said, fighting back tears.
As the ambassador, Laura said Violet would be appearing at different events and fundraisers throughout the year, sharing her story.
“It was a great story and a great little person to help tell it,” added Laura, looking down at Violet.
