Every night Niki Dumas feeds herself through a tube.
The 30-year-old can no longer stomach solid food.
For the past four months Dumas has been relying on a daily tube feed to receive the nutrients she needs to live.
Dumas lives with a rare abnormality called intestinal malrotation, which is a condition where the intestines are not in the correct anatomical position.
“My organs are in the wrong place. My large and small bowels are completely twisted,” Dumas told APTN News from her home in Carberry, Man.
People living with intestinal malrotation have a hard time digesting things.
Because of this people can experience intense bouts of vomiting, nausea and overall discomfort.
(“I run out of energy. I get really tired fast,” says Niki Dumas seen here in the hospital. Submitted photo)
Dumas, who is originally from Mathias Colomb First Nation in northern Manitoba, has been sick since she was an infant but was only diagnosed with the condition in 2017.
She was four months pregnant with her youngest at the time when she started experiencing violent spells of vomiting.
She was hospitalized numerous times before doctors were finally able to determine what was wrong.
Since then Dumas has been in and out hospitals every month.
She has to travel from her home in Carberry to either Brandon or Winnipeg to receive treatment to help alleviate the pain.
“I run out of energy. I get really tired fast,” said Dumas. “Half of the time I’m sleeping because I’m so uncomfortable.”
“I just can’t be a mother to my children because I don’t have the energy.”
Dumas has three children aged six, four and her youngest is now 15 months.
She has undergone numerous surgeries to correct the issue including laparoscopic and open bowel surgery; she’s had her gall bladder and appendix removed; and the Ladd procedure, which is the most commonly used procedure to treat intestinal malrotation.
Dumas had all but given up hope of a solution when through a Facebook support group, she learned about a specialized surgery option based at the Cleveland Clinic in the United States – the only problem is Manitoba Health won’t pay for it, she said.
This appears to be an issue across the country.
Last year Andrea Taylor, 32, traveled from her home in Prince Edward County, Ont., to the Cleveland Clinic on her own dime after the Ontario government refused to pay for the surgery.
“The procedure has given me my life back,” Taylor said over the phone from her home. “It has given me more than what I had before.”
Taylor was the first to tell Dumas about the surgery.
She was diagnosed as a newborn and received the Ladd procedure at 12-weeks-old.
“The Ladd procedure is a bit of a band-aide on a bullet hole. It’s really good in emergency situations but for overall gut function it kind of just sets things up for problems down the road,” said Taylor.
(“The procedure has given me my life back,” says Andrea Taylor. Submitted photo)
Those problems came throughout the years ultimately leading to complete gut failure in 2017.
Taylor was placed on IV nutrition support for nine months. She had to quit her job as a teacher and move back home with her parents.
Both Taylor and Dumas were essentially told the surgery is considered experimental and therefore would not be covered.
Taylor’s family and friends spent months fundraising to cover costs.
The nearby Tyendinaga Mohawk Territory also helped fundraise for the family. Taylor, who is non-Indigenous, worked at the school as well as her mother for most of her life.
Taylor says governments need to be held accountable because lives are at risk if the surgery isn’t covered.
Dumas has also started her own fundraising efforts through GoFundMe.
She says doctors in Cleveland have estimated it could cost up to half a million dollars for travel and surgery.
Last month, Dumas completed a five-day awareness walk from Carberry to Winnipeg where she ended at the Legislative Building.
She called on the government to intervene.
“I’m hoping…they help me get on my way to receive this life saving surgery that I need,” Dumas told reporters at the time.
Since then, Dumas says she has received numerous messages of support but little has changed.
Manitoba Health did send a Winnipeg man to Cleveland for the surgery last year.
According to a government spokesperson, out of province procedures can be covered if a physician deems it necessary.
Dumas says she hasn’t had much luck with her previous doctors. She has since been assigned a new one and is working to meet with a specialist.