Eleven years ago Nevaeh Friesen-Bowman was the first of four children for Emily Duchscher.
Duchscher was overdue by 13 days. The latter days of pregnancy, as any mother would expect, were trying and uncomfortable. When her daughter made her appearance at Calgary’s Foothills Medical Centre, Duchscher, 32, was ecstatic.
Nevaeh weighed 8lbs 3 oz. and, as Duchscher put it, she was chubby and “all cheeks”.
“She was just the sweetest, quietest little pumpkin,” Duchscher said from her Cochrane home. Nevaeh, who nestled herself close to her mother’s overstuffed armchair, asked her mother softly “Am I quiet still?”
“Yes, you are quiet still.”
Nevaeh is a lot of things. A spattering of tiny freckles dance across her nose and forehead and her delicate features are framed by an abundance of curly dark hair. Duchscher explained that last week her daughter was playing Beyblades with a boy her age. Her mother overheard the boy tell Nevaeh “You have really cool eyes”.
Nevaeh’s eyes are the first feature most people notice. Her parents nicknamed her "Angel Eyes". When she was a newborn her parents were pleased that their firstborn passed her Apgar score. The scoring system, developed in 1952, is a method used to quickly summarize the health of newborn children against infant mortality.
A few days later Nevaeh’s father was alarmed when he noticed a unique feature in her right eye. The anxious parents brought their daughter to the Alberta’s Children’s Hospital in Calgary and after a series of tests Nevaeh was diagnosed with retinol coloboma. The condition is caused when a gap called the choroid fissure, which is present during the early stages of prenatal development, fails to close up completely before birth.
Nevaeh’s case effects her iris and impacts her central vision. Duchscher explained that her daughter only has peripheral vision in that eye and her central vision is obstructed. An ophthalmologist told the parents that it was unlikely their daughter would ever be able to hold a driver’s license.
The couple kept an open mind about the diagnosis and hoped that one day medical science would advance enough to correct the condition. Duchscher did learn of a surgery that would cosmetically correct the iris, but wouldn’t improve her daughter’s vision.
“There was no sense putting her under for something that wasn’t going to change her ability to see,” she said.
Life went on, and little Nevaeh hit the normal development milestones until she was about two years old. Duchscher noticed that her daughter wasn’t gaining weight and after meeting with a dietitian she was referred to a gastroenterologist at the Alberta Children’s Hospital. Nevaeh underwent more tests, was fitted with a nasogastric feeding tube, and stayed at the hospital for a few weeks. She continued to use the tube for several years after.
When Nevaeh started to feel better her mother noticed that she would cough heavily when she became active. Doctor’s discovered that the little girl was asthmatic and detected a heart murmur. By this time Duchscher had three other children under her wing.
“It was quite the challenge.”
Nevaeh’s challenges continued. Frequent urinary tract infections plagued the little girl and doctors discovered that she had vesicoureteral reflux. This type of reflux is the abnormal flow of urine from the bladder back up the ureters that connect the kidneys and bladder. Nevaeh underwent surgery to correct the condition back in September, but doctors are now worried that the condition may have been “over corrected” and the 11-year-old might have to undergo surgery again.
Nevaeh also has a harmful bacteria in her saliva that attacks the enamel on her teeth. To date, she has had two dental surgeries. In an x-ray it was discovered that she doesn’t have molars and it’s likely that Nevaeh will receive dental implants in the future.
“It’s just another road we’re going to cross,” Duchscher said optimistically. A genetics team at the hospital has been following the little girl and determined that Nevaeh is “globally delayed”, or delayed in more ways than one. In addition to her vision impairment, Nevaeh is cognitively and socially delayed and has a speech impairment.
The genetics team discovered a deletion in one of her X chromosomes. Duchscher said she was told by the team that had Nevaeh been born a boy - with an X and Y chromosome - she wouldn’t have survived. Duchscher also learned that it was a miracle that she was able to carry Nevaeh to full term and her likelihood of a miscarriage was particularly high.
Nevaeh’s medical history aside, the biggest challenge Duchscher has faced is access to support and funding for her daughter’s remarkable needs. When her daughter attended kindergarten - twice - she was eligible for Program Unity Funding (PUF) through Alberta Education. The funding pays for early educational needs of children with a severe developmental disability or delay. Children are no longer eligible for this funding when they reach Grade 1, or six years of age.
“As soon as Nevaeh entered Grade 1 it was like this rope had been cut and we had no access to anything,” she said. Nevaeh's unique condition, or umbrella term of “globally delayed”, means she doesn’t qualify for funding because she doesn’t have an official diagnosis.
“She doesn’t have a specific label, because of that there’s no funding for her.”
Nevaeh struggled through public school both academically and socially. After dealings with bullying her mother moved her from Elizabeth Barrett Elementary School to RancheView School. Her mother hoped Nevaeh would have a fresh start, but even under the attentive eye of her Grade 4 teacher, she didn’t improve.
Tearfully Duchscher said there’s a massive gap for high needs children in Rocky View Schools’ (RVS) public system. Duchscher explains that Nevaeh would continue to be moved to the next grade level even when it was clear that she wasn’t ready. When Duchscher spoke to the school about her concerns, she was told Nevaeh would receive support. Duchscher said the support wasn’t consistent because of funding cuts.
“If your child needs one-on-one in the classroom, you’re not going to get it. Nevaeh needs those supports and they haven’t been there.”
The only regret Duchscher has is not homeschooling Nevaeh earlier. Her daughter spends her days with her mom learning Alberta’s Grade 5 curriculum. Her mom is thankful for the support and attention from other home-schooling mothers within the community.
She didn’t want Nevaeh to feel any different from her siblings, who still attend school in the RVS system. She did a call out on the Facebook group “Cochrane Mom’s Coming Together” on Jan. 23 and requested that strangers send her daughter Valentine’s Day cards.
What happened next was astonishing.
The response she received from the community was overwhelming. Nevaeh received small gifts, hand made crafts and countless cards with handwritten notes of encouragement.
“Stuff like that makes Nevaeh’s day,” said Duchscher about the Valentine’s Day surprises she’s been receiving.
Duchscher and a group of other local parents have joined "Love is Louder Cochrane". The newly formed group, with a presence on Facebook and Instagram, meets regularly and strives to bring the anti-bullying movement home to Cochrane.
Sometimes is takes a village.
