River Lapensee is dying and his parents are ready.
“We already have a pathologist lined up,” says his mother, Selena Castel.
The 12-year-old is confined to a hospital bed in the living room of his family’s Winnipeg home.
Here, children’s books and toys belonging to his younger siblings share space with River’s potent drugs and life-saving equipment.
His parents aren’t morbid – just following doctors’ orders.
“They say they can’t do nothing for him anymore,” says Selena, getting emotional as she holds her son’s hand.
“He’s in palliative care,” adds his father, Robert Lapensee.
River can’t talk, walk or feed himself.
He can push himself up on his arms and hold a smartphone to watch videos.
“He loves Family Feud with Steve Harvey,” says Robert, stroking his son’s hair. “Anything on YouTube.”
It’s hard to imagine the boy lying here was ever not sick.
His parents say everything changed after he entered daycare at Sakastew School on Mathias Colomb Cree Nation in northern Manitoba at three months of age.
Then his health began to deteriorate.
He’d get flu-like symptoms and hit his head with his hand to indicate he had a headache.
(Robert Lapensee checks an IV while River watches the latest YouTube video. Photo: Kathleen Martens/APTN)
At two years of age Selena says he contracted cryptosporidium from contaminated drinking water at the school.
A school only recently closed due to mould infestation.
On Dec. 4, 2018, an educational consultant shuttered the doors of the kindergarten to Grade 12 school after discovering documents revealing long-term mould contamination.
A discovery River’s parents believe solves their son’s medical mystery.
“I know the answer,” says Robert. “My son was poisoned by mould, lead and asbestos in Sakastew school.”
River’s doctors say they can’t confirm this.
“They tell us there is no blood test for mould because everyone reacts to it differently,” says Robert.
“Once he passes they can test his organs and confirm what made him so sick.”
(Selena on the phone with River’s doctor while Robert tends to his son. Photo: Kathleen Martens/APTN)
They say River has between six months and two years left to live.
Since the school closed, River’s parents have been researching mould poisoning.
It’s a subject making news after Cat Lake First Nation in northern Ontario declared a health and housing emergency related to mould.
The area’s member of Parliament has attributed the death of a 48-year-old woman to living in a mouldy home.
Over the years, Selena says River suffered from eczema, pneumonia and seizures.
Today he is seriously ill, wears a diaper and takes his meals through a feeding tube.
His parents and nurses pump fluid out of his lungs twice a day to help him breathe through the tube in his throat.
“The last time he walked was Dec. 14, 2016,” says Selena, who has three other school-age children and lost two boys in a fatal trailer fire in 2008.
(The shelf by River’s bed is always well stocked with medical supplies. Photo: Kathleen Martens/APTN)
In an effort to help confirm whether his parents’ theory is correct, River’s doctors have agreed to test his blood for lead while he is still alive.
And now that they know about mould at the school, Selena says they “are open” to it being an “environmental” cause.
Selena was a former housing manager in the remote community before she quit her job to become River’s educational aide and now primary caregiver.
She says the school and houses in Mathias Colomb are riddled with toxic black and green mould – and many children are sick.
This matches what education consultant Guy Dumas told APTN News last month after he ordered the school closed.
“There was already so many kids that were sick (with) bleeding noses and coughing,” he said at the time.
“There’s been one death…of a kid that had respiratory issues. That kid was in daycare. Another kid here been hospitalized and the doctor has determined it was for environmental reasons.”
APTN asked for confirmation the death and illnesses were related to mould.
Dumas says that information is being prepared.
(River in bed in Winnipeg checking out his favorite videos. Photo: Kathleen Martens/APTN)
Meanwhile, mould is not only a problem in Manitoba First Nations.
The Assembly of First Nations says thousands of new houses are needed to replace mould-infected homes and address a growing “health crisis.”
Meanwhile, the new chief of Mathias Colomb, Norma Bighetty, has not responded to calls and emails to discuss the mould issue.
And former chief, Arlen Dumas, now grand chief of the Assembly of Manitoba Chiefs, was not made available for an interview.
But Canada’s newest minister for Indigenous Services, Seamus O’Regan, says “everyone deserves a safe and comfortable place to call home.”
He blames “years of neglect and underfunding” for “significant housing gaps” in First Nation communities.
His department is working with Mathias Colomb to reopen Sakastew School.
James Scott, a professor at the University of Toronto Dalla Lana School of Public Health, says the health effects of mould exposure have been known for some time.
But that doesn’t mean “we’ve managed it well,” he adds.
Scott says too many people in poorly built homes using water for cooking, washing and laundry stresses the ventilation abilities of any dwelling.
And there aren’t mould-free homes, apartments or hotel rooms for affected families to move into. Instead, they are forced to live in the rot.
Scott says doctors and politicians are now dealing with a situation that can be debilitating for some but not all.
“There certainly are people who have a predisposition for allergic kinds of symptoms and those do tend to react more strongly to moulds,” he says.
“Certainly, a number of quite common materials that moulds produce in abundance can disrupt the immune system.”