Rare medical condition takes breath away
When Annie and Everette Haselow get a request to help someone in need, they'll make gallons of spaghetti sauce to donate for a spaghetti fundraiser.
At times, they've donated gift cards for their restaurant at Northwoods Family Grille in Silver Bay, Minn. In fact, Friday, the couple from Finland, Minn., headed to Duluth with a stack of cards to buy gifts for children in need.
Now, Kaylee Danielson, formerly of Superior, is hosting a fundraiser for her mother, Annie Haselow, after her mother received the first of two infusion treatments at the Mayo Clinic to help her breathe.
The clinic is out of the network of providers covered by her mother's insurance company, so the costs will be coming out of pocket, Danielson said.
Annie has been diagnosed with antisynthetase syndrome, a rare autoimmune disorder characterized by lung disease and scarring, muscle inflammation and reduced blood flow (Raynaud's pneumonia).
Five years ago, Annie said she was diagnosed with polymyositis, a chronic inflammation of muscle tissue, then about two years later, she was diagnosed with pulmonary fibrosis (deep-tissue scarring of the lungs) and nonspecific interstitial pneumonia, which causes coughing, difficulty breathing and fatigue.
Antisynthetase, is a way of describing all of these conditions, her husband said.
"My doctor calls me his unicorn, because it's kind of rare," Annie said. "He hasn't anybody else who has everything 'in the 20-some years he's been practicing,'" Everette said, finishing Annie's statement.
"We caught it after about six weeks of something that was going on," Everette said of the initial diagnosis. "It was like walking pneumonia. And currently that's what she's forever going to be like. The damage that was done to her lungs can't heal. And because she has an autoimmune disease, she's not eligible for a lung transplant. So the damage that is there is done. We just hope it doesn't get any worse."
For Annie, that means seeing a rheumatologist every three months and pulmonologist every six months — each time taking a pulmonary test and getting CT scan. It also means submitting to monthly, and sometimes biweekly, blood tests, taking medications, using oxygen and now testing and infusion treatments to alleviate the inflammation at the Mayo Clinic.
Danielson said her mother was having even more difficulty breathing, running out of breath routinely.
Annie said she has taken as many as eight prescriptions to treat her condition, but is now down to three prescriptions with the introduction of the new treatment.
"My mom is everything," Kaylee said. "She's a huge part of our community; she's a huge part of the restaurant. I want to help her because the more we do now, the less she has to worry and maybe she doesn't have to spend a Thursday night at the restaurant. She can go home and relax. She can afford to mentally take that time away."
Danielson moved to Finland two weeks ago so her husband, Matthew, could take on her mother's role at the Northwoods Family Grille, and she started planning a fundraiser to help with out-of-pocket medical expenses.
Annie Haselow said she used to do everything for the family business, from cooking to waitressing, but walking across the restaurant's large dining room is difficult with her condition, especially when she needs to be on oxygen. She does the baking now, she said.
A benefit for Annie Haselow, which includes a spaghetti dinner, silent auction, family entertainment, music and live comedy runs 4-8 p.m. Sunday at the Clair Nelson Center, 6866 Cramer Road, Finland, Minn. A YouCaring fundraising page has also been set up at youcaring.com/annehaselow-1010599.
"It will allow us to breathe and enjoy what years we have with her, whether that's two years or five years, or God willing, 20 years" Danielson said. "Every day with her is a blessing."