The fight for Rose Schwarz continues with local benefit
By Shara JJ Cooper
Grand Forks locals have a chance to help former resident, 25-year-old Rose Schwarz as she battles for her health and life.
Schwarz has been fighting for her own well-being for the last 11 year, since she was 14-years-old. During that time, her health has gotten continuously worse. Now she can only eat through a feeding tube because her stomach was removed, her intestines are starting to fail and she is constantly at a dangerously low body weight.
Currently, she weighs 33.1 kg (73 lbs), which at a height of 165.1 cm (5’5”) is dangerous by any standards. However, her mother – who has been fighting at her side all this time – says it’s an improvement from her weight last summer when she got as low as 28.1 kg (63 lbs).
“She just can’t seem to put more weight on,” said her mother Tani Schwarz-Gilbert, adding that the problems with her intestines seem to have made weight gain impossible. “She’s getting the same amount from her feeding tube as she did before. She’s just not absorbing it.”
Schwarz-Gilbert said that she only shares pictures from when her daughter weighed 80 to 90 lbs.
“No one would recognize her now,” she said, adding that Schwarz was popular in Grand Forks and many people still care about her. “She has a personality that draws people to her. People loved her.”
For years, Schwarz and her family didn’t know what was causing the chronic illness. She went for testing all over Canada and the United States, but two years ago she pulled a mass out of leg that they determined to be a tick.
Schwarz-Gilbert said they had looked into Lyme disease when she was younger, but the test was negative. She has since learned that the test is accurate in only limited circumstances. She took her daughter for more accurate testing in California where they received a resounding affirmation that Schwarz did indeed have Lyme disease. Unfortunately for Schwarz, there is no widely recognized cure and the current treatments won’t undo the damage already done to her body.
Her mother said that this is frustrating, scary and they get mad when they think about how much they could have prevented if they had the diagnosis earlier.
“She would still have her stomach,” said Schwarz-Gilbert.
Schwarz-Gilbert has been doing her own research, talking to other Lyme disease patients and specialists to find out the best way to help her daughter. Most of the options include getting treatment outside of Canada and cost a lot of money.
When Schwarz-Gilbert realized this, she started a crowdfundraiser on FundRazr with an initial goal of $5,000. That goal was reached in three days and she contacted the host site to see what to do next. They said she could change her goal so she raised to $20,000. That goal was reached two weeks ago.
During her research, Schwarz-Gilbert has been told by other Lyme disease patients that they have spent hundreds of thousands of dollars on treatments in as little as one month so she has decided to leave the site open for more people that want to help.
She has been looking into several options for Rose, one that includes long-term intravenous antibiotics, which they are hesitant about because no one wants to be on antibiotics long-term, she said. Other options include working with naturopaths and more specialized and radical treatments in as far away as Mexico or Germany. It’s a hard decision, one that she doesn’t want to rush, but on the same note, they are running out of time.
“Whatever we do, we are going to do it next month,” she said. “It’s scary to spend the money with no guarantee. We are trying to be careful, but we can’t wait too long either.”
Benefit event
In continuing their fundraising efforts, Schwarz-Gilbert and her husband Gary are hosting a benefit in Grand Forks on May 31. Gary’s band Dr. Fun and the Nighcrawlers – a well-known band by locals – will be performing at the Grand Forks curling rink. They will be opened by the band “No Excuse.” Schwarz-Gilbert said it was a long-shot, getting the band together as the band members live all around BC, but they all happily regrouped for the benefit.
“There will be a 10-piece blues band with a full horn section,” she said, adding that her husband’s band is still popular in Grand Forks and he gets stopped so much when they come to visit that he feels like a celebrity.
Tickets for the band are on sale at Sears and Thistle Pot Gifts for $25. They are selling 150 tickets, but Schwarz-Gilbert said there has been so much interest they could easily sell 300 if they had a larger venue. There will be a bar but only the proceeds from the tickets will go to the fundraiser.
Schwarz-Gilbert and her husband will fly into the area on May 30 but Rose is too sick to travel.
“She’d love to be here,” said Schwarz-Gilbert.
Anyone interested in making a donation can do so through the “Rose Fund” at the Grand Forks Credit Union or the FundRazr site.
