Stephanie Fox spent almost two years being debilitated by Lyme disease and Bartonella infection before doctors were able to diagnose them, and had to make arrangements for who would care for her dogs in the event of her death. But because of the popularity of her wheelchair-toting Border Collie Roosevelt, she has found a network of friends to help her battle her illness.
In April 2012, photographer Robert F. Bukaty published a photo essay for the Bangor Daily News featuring Stephanie’s dog Roosevelt. Her Border Collie was born with malformed front legs, causing him to hop around like a kangaroo. But his hopping caused his spine to curve, so Stephanie had a special wheelchair made for him.
“He was so hardcore on his first one, he kept bending the frame,” the Portland woman said. “He kept hitting jumps and jumping over things.”
The photos of Roosevelt and his cart made their rounds on dozens of news and other media sites, leading to the creation of his own Facebook page. But as Roosevelt’s popularity was on the rise, Stephanie’s health began to deteriorate.
She began experiencing headaches, fatigue, unexplainable blurriness in her vision, and painful muscle cramps.
“Really strange things started happening,” Stephanie recalled. “I started losing my balance for no reason. I would just be standing there, and my legs would buckle.”
She underwent series after series of tests with different doctors, who considered diagnosing her with degenerative disc disease, poliomyelitis, and multiple sclerosis. Tests for Lyme disease came back negative. She always checked her dogs and herself for ticks after hikes, so that conclusion seemed unlikely. Her health continued to decline, and with no diagnosis in sight.
“[Walking the dogs for] five miles became three, then two, then one,” Stephanie said. “Then I couldn’t even get past the end of my driveway. I’d walk out to the end of the driveway, and I’d have to lay down just to get the strength to walk back to the house.
“I made arrangements for the dogs. I made arrangements to sell the house and kind of got everything cleaned up before I wasn’t able to do it anymore. I was getting so sick, the original doctors I was working with said, ‘Nothing more can be done.’”
Breathing became so painful that it required all of her concentration to do.
“I remember being scared that if I fell asleep, I wouldn’t remember to breathe. I would think, ‘If I wake up in the morning, what am I going to do next? And if I don’t wake up, is everything where it needs to be?’”
In October of 2013, a specialist ordered a more sensitive test for Lyme, and it came back positive. She also had the bacterial infection Bartonella. She was given antibiotics and detoxifiers, but strangely, her condition worsened.
“I completely lost the ability to walk. I couldn’t talk,” she said, noting that even faint noises such as the sound of her cat walking across the floor would echo in her head so loudly she would become nauseated.
But it was through Roosevelt’s Facebook page that her life was saved. One of his fans, a woman who runs a medical lab in Ohio, recognized Stephanie’s symptoms, and told her to immediately stop taking the antibiotic Ceftin. Though she didn’t know it at the time, Stephanie was born with two genetic mutations that make her more susceptible to toxins.
“If it wasn’t for her telling me to stop taking that medicine, I would’ve had a heart attack,” she said.
Another Facebook friend of Roosevelt’s, a chemist and herbalist, directed Stephanie to stop using certain everyday products, like toothpastes and soaps, that have chemicals her body rejects.
“Through this illness, it’s been friends of [Roosevelt’s] on Facebook that have given me guidance,” she said.
Though she is now feeling much better than she has in months, her fight isn’t over: all the appointments and treatments with specialists have added up to more than $20,000 – all out of pocket, leaving Stephanie’s finances in ruins. She has no idea what she will do in the future.
“I kind of don’t really ask [about] that far ahead anymore,” she said. “You kind of plan day-by-day. You kind of learn there are some questions you just don’t ask, because there are some things you just don’t want to know.”
For now she just spends as much time as she can with her beloved dogs, and she has arrangements for who will take them on in case she doesn’t wake up one morning. Despite this bleak outlook, she remains positive, thankful for all of her pups, and Roosevelt’s friends.
“I’ve had a lot of time to think,” she said, “and I don’t know how I ended up being so lucky.”
From Stephanie’s friend Valerie Markgren:
First, we must tell you that the recipient of this fundraiser was VERY reluctant to have us create this page. Not only is she a very private person, she says there are so many other people in the world facing catastrophic illness that she doesn’t think it’s fair. We disagree. We know she needs help to alleviate the incredible financial strain and resulting stress caused by TWO YEARS of misdiagnosis, lost work, reduced pay and the oftentimes unnecessary and VERY unpleasant side effects when she DOES get treatment – even when prescribed protocols prove to be life-threatening and ineffective!
Anyone who knows Stephanie knows how much she adores her three rescued Border Collies. Coal is the oldest. He is partially blind and can have difficulty with strangers but he loves his “mom” and snuggles with her often – frequently hogging the bed! Roosevelt was born with malformed front legs but that doesn’t stop him from puttering happily in his front-wheel drive wheel chair – or simply hopping about on his hind legs like a happy kangaroo! He is a registered therapy dog and visits children and the elderly as much as possible. Izzy is a silly and very rambunctious sweet girl but she will lay quietly nearby in sympathy when her “mom” isn’t feeling well.
And sadly, Stephanie rarely feels well. She is critically ill.
Two years ago she began experiencing extreme fatigue, excruciating muscle pain and debilitating headaches. After a battery of tests and thousands of dollars spent on doctor visits she was finally diagnosed with advanced stage Neurologic Lyme disease. It has settled in all of her major organs and is exacerbated by two rare gene mutations that make treatment impossibly slow and dangerous to manage. Most recently she was taken off her antibiotic because she was in danger of cardiac arrest. Needless to say, Coal, Roosevelt and Izzy are in desperate need to get their mum back on her feet and healthy!
Our friend is a staunchly private and stubbornly independent 47-year old woman. She has always enjoyed an active lifestyle that included keeping her dogs busy on long hikes, walks on the beach, play sessions and visits with those in need. She has always been someone to volunteer for the rescue her dogs came from and even managed to raise over $1,000 in a “Roosevelt the Border Collie” shirt fundraiser that she managed 100% on her own despite experiencing incredible pain packing and shipping orders. (We said she was stubborn, didn’t we?)
Those active days are virtually over and much to her embarrassment and horror she VERY reluctantly allows her friends to help with some day-to-day tasks. It wasn’t until her closest friends began asking some hard questions that the truth of her debilitating illness surfaced, along with the staggering financial challenges she faces every day. We know that when she is better (and we truly hope and pray she does get well) we know she will continue her philanthropic efforts and continue to give back to the community.
We are asking you to consider how you can help our friend get back to being active with her friends and the three Border Collies she so adores.
We are really scared for our friend! She is already experiencing organ damage to her eyes, brain, lungs, liver and heart. Without the necessary (protracted) treatment her prognosis is grim. She faces permanent organ damage that could ultimately take her life. Throughout this battle she struggles with the heartbreaking reality of losing her house, job and re-homing her dogs, permanently.
Why is this so hard? Doesn’t her insurance cover the costs? Lyme disease is hardly a new phenomenon.
While Lyme has been around for a number of years, the disease is only beginning to be understood by the medical and insurance communities. Usual protocols are minimal and rarely successful (30 days on an antibiotic and that’s about it) and insurance covers very little of the real cost of living with and treating this disease.
A specialist in New York that charges $900 per hour may be her only hope. Having already spent over $20,000 out of pocket for treatment she faces certain financial collapse. All in an effort to keep up with this insidious and misunderstood disease. Her debts continue to rise and we are running out of hope!
If you would like to help please click on the button on this page and make your contribution. We need your help NOW. Thank YOU!
If you would like to help Stephanie by contributing to her fundraiser, please click here.