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Embree family still holding out hope after rare diagnosis

Stephen and Jess Edwards, with their one-year-old son Jake, are looking forward to celebrating Christmas while dealing with major medical issues impacting Stephen over the last number of months.
Stephen and Jess Edwards, with their one-year-old son Jake, are looking forward to celebrating Christmas while dealing with major medical issues impacting Stephen over the last number of months. - Submitted

Edwards’ looking forward to celebrating Christmas and working towards a road to recovery for Stephen

EMBREE, NL — It’s been less than six months since Stephen Edwards was diagnosed with a serious illness. While he is now at home in Embree with his wife Jess and the couple’s one-year-old son Jake, the 24-year-old could end up back in hospital at any time.

Stephen began having medical issues in August. He felt fatigued, had a lot of headaches and began coughing up blood.

He spent more than a month in hospital in St. John’s (first at St. Clare’s then at the Health Sciences Centre) where he was diagnosed with a rare autoimmune disorder called Goodpasture syndrome. The syndrome – which affects the lungs and kidneys - causes the immune system to mistakenly attack and destroy healthy body tissue.

“We were home for a week-and-a-half and (Stephen) started coughing up blood again. I was on my way to emergency with him when he had a seizure in the truck,” Stephen’s wife Jess said.

Stephen continued to seizure. He ended up back at Health Sciences Centre on life support.

RELATED: Embree couple faces uncertain future in wake of rare diagnosis

“He was in ICU in the Health Sciences for a while (in September),” she continued. “He got out for one night but had to go back down (to the hospital) again because his blood pressure went through the roof, his vision was blurry, his legs went numb.”

While Stephen got home from the hospital in St. John’s in October, he was admitted to the hospital in Grand-Falls Windsor in November where he spent a week being treated for an infection in his esophagus.

Jess said her husband recently started coughing up blood again. It was devastating when that happened, she said, as they were hopeful that part of his illness was behind him.

“They didn’t admit him this time because they are not sure there is anything else they can do at this point. And they just told us a couple of days ago that his heart is enlarged,” Jess said, which means Stephen will have to undergo other diagnostic procedures.

As for the cause of the disease, she said, it’s suspected that it may be the result of exposure to hydrocarbon. Stephen is a former Alberta oil sands worker.

He now takes more than 45 pills a day.

His health insurance has run out.

“Right now his medical coverage is terminated,” she explained. “We are waiting to see if he can go on short-term disability. That might give us four months (of medical coverage). But right now, we don’t have any coverage.”

Jess is pregnant with the couple’s second child. Their baby is due to arrive in March 2018.


Jess, who stays at home to care for her baby and her husband, said her family is grateful for all the fundraising the community has undertaken since Stephen became ill.

There has been everything from a concert to a dart tournament to a breakfast fundraiser, she said.

A Go Fund Me page set up in August raised almost $5,000 for the family.

Visit the GoFundMe page. 

“All I can say is a big thank-you to everyone,” Jess said. “Because of the fundraisers we’re able to stay in our home and we can afford the pills as of right now.”

Because Goodpasture syndrome is so rare, it’s difficult to know what lies ahead for Stephen. However, Jess has been in touch with family from this province who has a relative living with the syndrome.

“He was diagnosed 30 years ago… he was on the same treatment (as Stephen)… he was laid up for six months while the treatment was working but he didn’t have any problems after,” she said. “And he got back to a normal, healthy life. That gave us a little bit of hope.”

While much has changed since last Christmas for her, Jess said, their plan is to have Christmas dinner with Stephen’s family and supper with hers.

“It’s really hard this time of year, but we are hoping to still be home by the time Christmas and New Year’s rolls around,” she said. “We don’t know from day to day where we will be. But Jake is walking now, and it’s going to be an exciting Christmas for us.”

Anyone who would like to donate to the family can do so by e-mailing

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