Family hopes city rallies for treatment
Resident willing to undergo punishing Lyme disease treatment
If Niagara residents rally behind her the way she and her family hope, Janet Ferrante could be on a flight to Germany early next year to receive treatment they say she desperately needs.
For years, she has suffered from debilitating Lyme disease and related infections.
The 37-year-old Niagara Falls woman used to run 15 kilometres a day, and she still manages to juggle two jobs when she isn’t left incapacitated by recurring symptoms.
She’s among a growing number of Niagara residents whose lives have been turned upside down by Lyme disease, transmitted by bites from blacklegged ticks.
Ferrante’s long struggle start- ed about eight years ago when she began experiencing symp- toms such as severe pain in her face and jaw, and numbness in the back of her skull.
She went from doctor to doctor in search of answers, in a health-care system critics say leaves Lyme disease victims with few choices in terms of viable treatment options.
Symptoms such as chronic fatigue, muscle weakness and muscle and joint pain often mimic those of other conditions, so it’s frequently misdiagnosed.
Ferrante was eventually diagnosed with Lyme disease and coexisting infections when Rocky Mountain spotted fever and the Babesia parasite — both often spread by infected ticks — and Bartonella bacteria, that can lead to muscle and joint pain.
Along with severe pain and weakness in her arms that impacts her ability to work, she suffers a host of symptoms such as memory loss, speech and balance problems. In April, she spent much of the month prone on a couch, with severe migraine-type pain.
“It’s when I go to bed, when I get up — it’s all day long,” she said of her torment. “Every day, there’s physical pain.
“I get very feverish,” said Ferrante. “I dry heave for an hour in the morning.”
She and her sister, Michelle Kapitanchuk, also of Niagara Falls, along with sister Jennifer Ferrante of Ottawa and her daughters Avery and Katie, Ferrante’s son Talon and Kapitanchuk’s husband and sons, have been working to raise money so Janet can undergo the treatments in Germany.
That included a stag and doetype fundraiser last year that raised $24,000, and they’ve raised another $10,000 through events such as a bottle drive and online auction.
But the treatment in Germany will cost about $60,000.
The sisters are hoping to collect enough to cover that treatment by hosting a dinner at the Firemen’s Park hall, on Mountain Road in Niagara Falls, on Oct. 18.
That will still leave Ferrante scrambling to pay bills, because she’ll have to be in treatment for about a month undergoing punishing hyperthermia, stemcell treatment and blood cleansing.
She won’t be able to work then, or during her recovery period.
Kapitanchuk said a couple from Fort Erie and a friend of Ferrante underwent the same treatment in Germany and are doing well.
“They say they have a 95 per cent success rate,” she said.
Ferrante is willing to undergo the radical treatment if there’s a chance it can eradicate or lessen her symptoms.
“I can’t keep doing this,” she said.
“I’m not getting better. It’s this or nothing.”
Kapitanchuk said the treatments certainly come with their own dangers.
“(But) I just want to do it so save her life,” she said.
She said her sister faces a sort of reverse stigma, because despite her terrible symptoms she doesn’t appear ill.
“People judge, because you don’t look sick,” she said.
The Oct. 18 event is at 7 p.m. and includes a pasta dinner with meatballs and cupcake dessert table, with entertainment by Jin and Frankie Pietrangelo.
Tickets cost $5 and are available at the door, by phoning Kapitanchuk at 905-321-5469 or emailing her at bmkap@outlook.com.
Ferrante said if people can’t make the event but wish to contribute to the medical costs, they can email her at janetferrante1@gmail.com.