ROCHESTER, Minn. — Johanna Watkins had hoped to be raising a family by now. Instead, the 29-year-old is battling a life-threatening disorder that’s forced her into isolation.

Johanna hasn’t seen her parents, Gail and Jon Fuenning, in more than a year, the Post-Bulletin reported. Her husband’s mere presence in the same room has caused anaphylaxis — an acute allergic reaction that can be fatal — since April.

Tears flow freely and words often fail when her husband, a one-time colleague at Hope Academy in Minneapolis, contemplates the heart-breaking separation caused by Mast Cell Activation Syndrome, a rare disorder named less than a decade ago.

“There have been so many times in the last eight months where we have reflected on all that we have lost,” said Scott Watkins, who married Johanna in 2013. “If we lived in that, it’d be constantly discouraging and there’d be no hope. We chose to live day-to-day. I may not be able to see Johanna for a month or another year, but, for now, I just can’t see her today.”

The symptoms are startling: migraines that leave welts, food allergies that cause a distended stomach and pregnancy-like stretch marks, nonfunctioning bowels, life-threatening sensitivity to sunlight, odors and virtually all foods, among other things. She’s even allergic to common pill casings and pain relief medication, which makes surgery basically impossible.

Johanna now weighs just 90 pounds and can tolerate just one meal per day, which Scott spends hours preparing as a continuing sign of his affection. Chuck roast and cucumber lamb have been her only meals for the past year.

“I still have good days and bad days, so there’s been physical pain as well as emotional pain,” Johanna said via cell phone. “Everybody needs people. We weren’t meant to be alone. Losing my husband was an especially painful loss. We’re hoping it isn’t forever.”

Johanna’s world is now one air-tight bedroom at a Minneapolis home where her three siblings — Becca, Zach and Nate — act as caretakers. Their continual support has become a necessity. Due to genetics, they’re the only ones left who don’t send her into immediate anaphylaxis.

Related Articles 2 Louisville officers shot amid Breonna Taylor protests

Trump won’t commit to peaceful transfer of power if he loses

Kenosha lawsuit accuses Facebook of failing to enforce ban on violent rhetoric

Marchers shut down I-94 through St. Paul to protest Breonna Taylor decision

In Breonna Taylor case, limits of law overcome calls for justice Johanna doesn’t leave that cocoon of relative safety unless it’s to visit world renowned Dr. Lawrence Afrin at the University of Minnesota Medical Center. It took years of frustration and hundreds of hospital visits, including at Mayo Clinic, before she was finally diagnosed by Dr. Afrin in 2015.

The initial relief of identifying her ailment has since faded after dozens of med trials, including another that started Thursday, have failed to stabilize Johanna’s condition.

“As a dad, you want to be able to fix it,” said Jon Fuenning, who works in Mayo Clinic’s IT department. “I can’t fix this.”

Flummoxed and running out of options, the religious family turned to prayer. The response has stunned them.

After sharing their story on CaringBridge, Scott and Johanna were invited to live with the parents of a Hope Academy student whose home is less than a mile from Dr. Afrin’s care. That once-temporary solution has lasted about a year without complaint from the homeowners, Dan and Lucy Olson, who can no longer cook in their own home due to Johanna’s increasingly sensitive condition.

A potential long-term fix has emerged, thanks to the generosity of friends, family and strangers. A GoFundMe web page detailing their situation raised $35,000 in the first week and now sits at nearly $120,000 after an anonymous gift of $5,000.

The Watkins purchased a modest home near Dr. Afrin’s office in August and have spent months creating a safe space for Johanna. As their story spread, contractors began donating time and supplies to fulfill the unlikely dream. Perhaps the most unique project was installing a positive air pressure system typically found only in sterile hospitals.

The renovated home is expected to be completed next month. Johanna will occupy the first floor, while Scott will live upstairs — separate but together until a better solution arrives.

“It’s not just people being generous to a couple who needs a special home,” Johanna said. “They’re giving us more time to try meds. They’re helping keep me alive by providing this safe space. What can you even say to that generosity?”

It’s possible their move will coincide with Johanna’s 30th birthday next month. However, the couple is already making plans to regift the home.

“Our dream would be Johanna is miraculously healed on the day we move in and we can give it away,” Scott said. “Our doctor has told us that he has a few patients who basically live in a bubble because of this disease. It would give me a lot of joy if they could use this house, too.”

As the holidays approach, Johanna made just one request of her family — she’ll “unwrap” a PowerPoint presentation December 25 to discover what gifts her family has sent to needy people around the world in her name.

The only person likely to see Johanna’s reaction is Becca, a fiercely loyal younger sister who has juggled her own family’s plans in order to keep her best friend company over the holidays. Their times together are increasingly special given Johanna’s uncertain future. Related Articles Marchers shut down I-94 through St. Paul to protest Breonna Taylor decision

St. Cloud bicyclist killed by hit-and-run driver, State Patrol says

Man on railroad tracks is fatally struck by Amtrak train in Fridley

Trick-or-treating too risky because of coronavirus, MN health officials say

To mask or not to mask at MN polling places. Judge hears arguments.

Her honest approach — “Why hold anything back?” — means she already knows how the moment will end.

“Whenever I see Johanna and I’m about to leave, our conversation usually goes something like ‘I don’t want you to go. I don’t want to be alone.’ We’ll both be crying and I’ll tell her ‘I don’t want to go either. I love you’” Becca says, tears streaming down her face. “On occasion, we’ll hug. She kissed me on the cheek a couple of weeks ago.

“It’s at that point where I think about what it cost her. I can go home and think it’s special, but she’ll spend the night with hives on her lips.”

Those stories evoke a mixture of pride and sadness in Johanna’s mother, Gail, a nurse in Rochester Public Schools. She aches to see her ailing daughter, but settles for a supportive role that means driving to Minneapolis every weekend and nervously checking her phone throughout the day.

“I fully realize that there’s a potential that next week I could be saying goodbye,” Gail said. “I realize that, but I don’t focus on that. My focus is on what I can do to support Becca and Scott, because they see the pain, they see the hurt. I still dream that maybe I can hold her.”

Gail says her hugs with Scott often devolve into sobbing sessions, each taking comfort in the other’s arms while their loved one remains out of reach. However, the devoted husband hasn’t backed away from his commitment, learning the technical terms to be an asset during their frequent hospital visits and protecting the wife he rarely sees “like a lion,” Becca says proudly.

Despite those difficulties, the Watkins still hold date night a couple times each week. They’ll fire up TV shows from separate rooms — often cooking shows, ironically — and text as if they were talking. It’s their time to focus on each other, rather than the illness.

Hearing of those tender moments brings tears of bittersweet joy to Johanna’s father.

“(Scott) has gone above and beyond anything I could have ever have hoped for in how to love my daughter,” Jon said. “When you make that vow of loving your spouse in sickness or in health, and when she became ill, it really shows the measure of the man.

“They aren’t letting the illness rob them of that ability to love. It’s different, but it’s a beautiful thing.”