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!
Enough, is enough! We have to get some help for our friend so she can get back on her feet AND spread the word about this terribly misunderstood disease. Lyme.
First, a few facts from LymeDisease.org:
Some people with chronic Lyme are as disabled as people with congestive heart failure, and have as much pain as post-surgery patients.
The tests most doctors rely on miss 44 out of 100 patients – not much better than a coin toss.
The average patient sees 5 doctors over nearly 3 years before being diagnosed – and 40% end up with long-term health problems.
To help you understand more about Lyme disease and the rare gene mutation (MTHFR Genetic Defect), please visit the reputable links posted at the bottom of this page. We are so very grateful that Steph has allowed us to tell part of her story to help spread the word.
More about our friend…
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!
Not only has Stephanie gone through her entire health savings, account she is on a short term leave that pays half her annual salary. This amount is barely enough to pay her mortgage. So how can she afford the medical care that she so desperately needs? And what about home repairs, car upkeep and the barest of necessities?
We simply don’t know!
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!LymeDisease.org
Links and information:
Under our skin
MTHFR Genetic Defect
Those with the MTHFR defect cannot “Methylate”