At first glance, Hope looks just like any happy seven-year-old girl.
But she has what her parents refer to as an “invisible” disability — Fetal Alcohol Spectrum Disorder (FASD).
That's because Hope's birth mother drank while she was pregnant, damaging the baby's developing brain. Hope, like her nine-year-old brother, Carter, was adopted by Shelley and Johnny MacKewn as a newborn.
While Shelley said they're blessed to have two wonderful kids in their lives, it's been a difficult road.
Hope, who was diagnosed with FASD at the age of four, has a borderline global developmental delay, meaning her IQ is very low, and she currently functions at the level of about a three- or four-year-old.
She also has difficulty with remembering things from day to day, impulse control and appropriate behaviour.
As Carter has the same birth mother as Hope, he's also suspected to have FASD, and is currently undergoing assessments at Health Sciences North. He has a number of issues, including a severe learning disability.
Hope sometimes gets into conflicts with her brother or schoolmates because of her disability.
“If she's thinking to do something, she doesn't think about the consequence of it,” said Johnny. “If her brother's upsetting her, and she has something hard in her hand, he's getting it in the face.”
The little girl will be entering Grade 2 in an intensive support program at Redwood Acres Public School this fall, and Shelley and Johnny said they hope their daughter will thrive with the extra one-on-one attention.
“A lot of the children with fetal alcohol, you see behaviours with that lack of impulse control and poor judgement,” Shelley said.
“Unfortunately these kids are being labelled as bullies, as unmotivated, and as not good kids, but that's not the issue at all.”
While for the most part it's hard to tell Hope is any different from other children her age — at least physically — she does have some distinct facial features associated with FASD.
She has eyes that appear to be wide-set, no indentation under her nose and a thin upper lip.
When Hope was diagnosed with FASD, Shelley began researching the condition. She came across a Reader's Digest article about how a service dog had made a world of difference to a boy with FASD.
Shelley looked into the idea and learned that Thames Centre Service Dogs, located in Thorndale, Ont., could train a service dog for Hope.
The parents say the dog can help Hope in many different ways, including crossing the road, taking her away from social situations that make her agitated and even helping her get a good night's sleep.
Because Hope has a sensory disorder associated with her FASD, she has difficulty sleeping unless she's under weighted blankets. With her service dog sleeping in her bed, its weight will “help her to feel comfy,” Shelley said.
The dog will also be able to go to school with her.
While Hope has a hard time remembering she's getting a dog because of her memory problems, her brother Carter is pretty excited.
“At first he was a little jealous that Hope was getting a dog and he wasn't, but as we explained what the dog was for and was going to be able to do, then he was excited, because he gets a lot from her,” Johnny said.
Hope's new service dog will be one of a litter of Golden Retrievers which were born July 10. They'll be bringing the puppy home next month, and until it's six months old, it'll receive basic training from a local dog trainer.
Then, the dog will enter the Thames service dog training course. The MacKewn family will have to travel to Thorndale, near London, Ont., once a week for six months.
But all of this doesn't come cheap. The family said it will cost $20,000 to train the dog.
To cover at least some of the price tag, the MacKewn family has organized a number of fundraisers. They're hoping to raise about $8,000, although a good response from the community means they might make much more.
A comedy night featuring Canadian comedy star Pete Zedlacher and three local comics, as well as live music from This Band, takes place starting at 7 p.m. On Sept. 6 at the Steelworkers Hall. Tickets cost $20 each.
The Paws For Our Hope Golf Tournament takes place Sept. 8 at the Chelmsford Golf Club. The $100 entry fee includes not only a day of golfing, but dinner and entertainment afterwards at the Dog House Restaurant in Azilda.
The fundraising events come just before Fetal Alcohol Spectrum Awareness Dayon Sept. 9. Locally, the day will be marked starting at 10 a.m. with an awareness event at Tom Davies Square.
The Azilda Dog House Restaurant has also been asking customers to donate $2 to help the MacKewn family acquire a service dog for Hope.
Those who donate are able to decorate a picture of a golden retriever or a paw, which are then taped to the restaurant's walls.
Leslie Vanden Elzen, who owns the Azilda Dog House Restaurant with husband James Demeau, said she's known the MacKewn family for years, and wanted to help.
A former child and youth worker at Genevra House, Vanden Elzen said it's also her passion to help children in need. She said her customers have already donated more than $1,000, and there's still a few weeks left in the campaign.
“I'm uplifted by the community's generosity,” Vanden Elzen said. “I had said to Shelley when we first started, you will be taken aback by how generous the community here is. It's proven itself.”
For more information about the fundraisers, or to purchase tickets, phone Shelley MacKewn at 705-670-4622 or email her at [email protected].
-FASD is the leading known cause of preventable developmental disability among Canadians. It is estimated that FASD affects approximately one percent of the Canadian population.
-FASD cannot be cured and has lifelong impacts on individuals, their families, and society. Effects, including alcohol-related birth defects, can vary from mild to severe and may include a range of physical, brain and central nervous system disabilities, as well as cognitive, behavioural and emotional issues.
-Canada's new Low-Risk Alcohol Drinking Guidelines advise that there is no safe amount, and no safe time, to drink alcohol during pregnancy.
Source: Public Health Agency of Canada