When most people in Ontario need medical treatment, they can rely on their family physician or local hospital. But for this Bradford family, things aren’t so simple.
Respite worker Nichola Wright has been working with Brooklyn Mauca for almost one year and recently launched an online fundraising campaign for the family to help cover some of the tens of thousands of dollars in specialized therapies and medical treatment for the eight-year-old.
Following a tonsillectomy and adenoidectomy when she was just 22 months old in June 2017, Brooklyn was experiencing respiratory issues, so mother and father, Christina and Josh, took her to Southlake Regional Health Centre in Newmarket where she later began hemorrhaging and eventually went into cardiac arrest for 20 minutes — leading to a brain injury.
As a result, Brooklyn developed epilepsy and lost most of her vision, speech and motor functions.
“She lost her ability to do everything. They told us that she’d never come off her ventilator. They weren’t even sure she would breathe on her own at that point,” Christina recalled.
While she still deals with vision impairment, Brooklyn was able to begin breathing on her own, and eventually began regaining some of her motor skills and even some of her speech with the help of physiotherapy, occupational therapy, speech language therapy, osteopathy, as well as medical doctors including neurologist.
“Eventually, she started walking again and now she’s running around,” Christina said. “Everyone always talks about the fact that she’s a walking miracle.”
That miracle had plenty of help from doctors — not just here in Ontario, but also from specialists in the United States.
Those specialists come at a cost though, and while previous fundraisers from July and December of 2017 raised $33,000 and $3,000 respectively, Christina and Josh have also had to sell their house just to keep up with the price of treatments and therapies for their daughter.
“More than anything we thank everyone in the town again for everything that they did six years ago,” Christina said. “We’re just really grateful and we know it’s a lot to ask for more help, but we wouldn’t be asking if it weren’t our last resort.”
While they’ve been trying to save as much as they can, time is of the essence for Brooklyn’s next treatment — stem cell therapy.
The family is trying to get her the therapy before the end of the year because they’ve been advised that the longer they wait, the less effective it could be.
Unable to find anywhere in Canada that provides the treatment, and finding most providers in the U.S. unwilling to work with children who have epilepsy, the parents found their only reasonable option will be to take Brooklyn all the way to Mexico where the stem cell therapy is expected to cost about US$15,000.
To make the most of that therapy, the parents were advised to follow it directly with neuro-intensive therapies, which they’ve also been unable to find in Canada, and which they expect to cost about US$20,000 for a two-week program from a centre in Austin, Texas.
Those costs don’t include transportation, lodging and food.
The C$30,000 fundraising goal won’t even come close to covering all those costs, “but we’ve been working too on our end to put money aside and save what we can,” Christina said.
It’s not the first time the family has endeavoured to ensure Brooklyn gets the care she needs.
In 2020 they drove all the way to New Orleans to take her to a specialist who treats pediatric brain injuries with hyperbaric chambers, in which patients breathe pure oxygen while under pressure.
The following year, they took Brooklyn to North Carolina to see a doctor who uses a combination of infrared lasers, hyperbaric chambers and vibration therapy in a two-week neuro-intensive program.
Most recently, they travelled to the clinic in Austin, Texas in 2022, where a doctor has developed his own laser equipment to treat pediatric brain injuries.
Trading off trips, both Josh’s and Christina’s parents have been along for the ride to help ensure there are always two adults available to deal with Brooklyn’s seizures, and to help keep an eye on twins Hudson and Abigail, now five.
“I honestly don’t know what we would have done if we didn’t have them,” Christina said. “It’s been a life-saver for sure.”
While she felt it’s “disheartening” being unable to find willing treatment providers in Canada, and having to spend “thousands and thousands of dollars,” Christina said the treatments have resulted in “massive changes.”
“We’re going to keep doing whatever it takes to take her to as many as we can and to give her the best opportunity to get the quality of life back,” she said.
One notable example was Brooklyn’s vision. Even though she couldn’t communicate the difference to her parents, Christina noticed that before treatment her daughter would “walk right into a wall,” while navigating their home, but after one of the earlier trips “all of the sudden we saw her deking the walls.”
Brooklyn also has a fondness for playing with toy balls which she frequently juggles on her fingertips like a fidget toy according to her mother, who explained that previously, if she dropped them it was almost as if they had disappeared. Now, Brooklyn is able to look for and find them, even if they’ve rolled under something.
On another trip her speech improved and after the last treatment, her seizures even decreased.
“Brooklyn just gets better and better the more times we go,” Christina said. “There’s been lots of great changes.”
Even though it’s difficult for Brooklyn to verbalize how she feels, it’s easy for her parents to see how happy she is enjoying her favourite activities including going for walks, playing at the park, swimming and gymnastics.
“She loves the sunshine, so when the good weather hits, we pretty much live outside,” Christina said.
Beyond that, Brooklyn also enjoys having people read to her, especially books with sensory or auditory components that allow her to feel or hear more during the story.
If her vision improves enough, the family is hoping Brooklyn will be able to communicate more using tablets or other technology.
Anyone who would like to help can contribute to the GoFundMe campaign, which is currently at about $7,500 of the $30,000 goal.
