Mary's RSD Medical Expense Fund
Donation protected
In February 2009, just one month before her child Justina turned one year old, Mary became critically ill, and she is still very sick today, 6 years later. She is a wife, sister, daughter, friend, and most importantly, a mother. (See the pictures below as well as reading her story.)
For three years while over 100 doctors tried to correctly diagnose her, Mary spent everyday vomiting so violently it took her to malnourishment; at one point it required her to be admitted to a nursing home so she could have a feeding tube. As the illness took its toll on Mary’s body, other symptoms and side affects like acute weight loss, severe digestive problems, shortness of breath, dizziness, fatigue and chronic weakness…made it impossible for Mary to care for herself or her loved ones. She could not drive, work, cook, get out of bed most days, or take care of her daughter alone. On many days, Mary’s family would have no choice but to carry her from one room to the next because she was too weak. During this time, Mary’s husband Eli, was in a near-fatal car accident that left him with numerous injuries making life even more impossibly difficult. Family stepped in to help and medical bills were mounting.
After seeing more than 100 doctors, being in 6 hospitals, and having every medical test imaginable, she remained no closer to a diagnosis. Even after a 6-week admission to the MAYO clinic in Minnesota October 2010, doctors failed to diagnose her. She left there after grueling tests and procedures with “an unknown auto immune disorder”. Because the doctors did not know what she had, insurance refused many times to pay. Mary finally met an infectious disease specialist, who followed his instincts and correctly diagnosed her with a rare autoimmune condition, known as Whipple’s Disease. Her course of treatment would be two-year prescription of a very strong drug called Bactrim.
Unfortunately, while the medicine worked to heal Mary, it attacked her nervous system, triggering a neurological auto immune disease called Reflex Sympathetic Dystrophy (RSD) also known as Chronic Regional Pain Syndrome (CRPS). RSD is so painful it has been likened to having a finger or toe amputated DAILY. Within just six months of her diagnosis, Mary was prescribed a wheelchair to deal with the burning stabbing pains in her feet and legs. The pain and burning is so awful that even sleep is very difficult. Sadly, there is no cure for RSD, only a handful of treatments to dull the pain, which has not worked well for Mary. Her last, and final hope, is a nerve stimulator that could be surgically implanted into her back which is operated by remote control. However, at the present time, her insurance company is denying the procedure. Mary recently had the trial surgery hoping it will provide some relief from the unbearable pain. If it proves to help, she will then receive the final surgery, all of which is not covered by insurance. As her family says… "How can we not help her no matter what the cost?" Mary is a generous, giving, wonderful person and continues to help those in need even though she is dealing with RSD. Her sister, husband and daughter are somehow always smiling and are good kind people.
Mary’s sister Carolyn has been caring for the family for over 6 years now. Carolyn and her parents have sold much of their belongings, downsized homes, and are working extra jobs to try to pay for the extensive medical bills and treatments. Unfortunately they are not any closer to paying off their unending medical debt.
I have only known Mary for 2 years but I have found her to be so deserving of anything we can do for her. I am asking for your grace, to help Mary and her family thwart off their staggering medical expenses and perhaps give her hope that she may someday be able to afford new treatments, and pay for the ones she has already had. ANY amount helps!
Mary and Eli before Mary was sick.
Carolyn (Mary's sister), Mary, and Mary's little girl. Carolyn has make Mary and her family a priority in her life.
Mary with Whipple's disease before RSD. Eli recovering from a near fatal car accident. He was close to having his foot amputated.
Mary with the very rare Whipple's disease. Malnourished but still smiling!
After Mary was diagnosed with RSD. She was on prednisone for the disease but there were many awful side effects including this picture... moon face.
Mary's feet with RSD, a barbaric disease. Mary's feet burn like they are "stabbed, set on fire, & then run over repeatedly." Every day and every night she feels this pain.
This quote is from the RSD awareness site
"This condition causes intense chronic pain, regarded to be more painful than natural childbirth, amputation, or terminal cancer pain. And for many, (like Mary) the pain is constatnt."
WEBSITE to visit about RSD:
www.rsdhope.org/beginners-guide-to-crps.html
Again... let's get her some help to pay for the treatments she has already had and for some new ones like the nerve stimulator that may give her some pain relief!
THANK YOU for visiting this fund!!
***ALSO Mary and Carolyn would love any information on how to get insurance to pay for these much needed treatments. AND please spread the word on RSD.
For three years while over 100 doctors tried to correctly diagnose her, Mary spent everyday vomiting so violently it took her to malnourishment; at one point it required her to be admitted to a nursing home so she could have a feeding tube. As the illness took its toll on Mary’s body, other symptoms and side affects like acute weight loss, severe digestive problems, shortness of breath, dizziness, fatigue and chronic weakness…made it impossible for Mary to care for herself or her loved ones. She could not drive, work, cook, get out of bed most days, or take care of her daughter alone. On many days, Mary’s family would have no choice but to carry her from one room to the next because she was too weak. During this time, Mary’s husband Eli, was in a near-fatal car accident that left him with numerous injuries making life even more impossibly difficult. Family stepped in to help and medical bills were mounting.
After seeing more than 100 doctors, being in 6 hospitals, and having every medical test imaginable, she remained no closer to a diagnosis. Even after a 6-week admission to the MAYO clinic in Minnesota October 2010, doctors failed to diagnose her. She left there after grueling tests and procedures with “an unknown auto immune disorder”. Because the doctors did not know what she had, insurance refused many times to pay. Mary finally met an infectious disease specialist, who followed his instincts and correctly diagnosed her with a rare autoimmune condition, known as Whipple’s Disease. Her course of treatment would be two-year prescription of a very strong drug called Bactrim.
Unfortunately, while the medicine worked to heal Mary, it attacked her nervous system, triggering a neurological auto immune disease called Reflex Sympathetic Dystrophy (RSD) also known as Chronic Regional Pain Syndrome (CRPS). RSD is so painful it has been likened to having a finger or toe amputated DAILY. Within just six months of her diagnosis, Mary was prescribed a wheelchair to deal with the burning stabbing pains in her feet and legs. The pain and burning is so awful that even sleep is very difficult. Sadly, there is no cure for RSD, only a handful of treatments to dull the pain, which has not worked well for Mary. Her last, and final hope, is a nerve stimulator that could be surgically implanted into her back which is operated by remote control. However, at the present time, her insurance company is denying the procedure. Mary recently had the trial surgery hoping it will provide some relief from the unbearable pain. If it proves to help, she will then receive the final surgery, all of which is not covered by insurance. As her family says… "How can we not help her no matter what the cost?" Mary is a generous, giving, wonderful person and continues to help those in need even though she is dealing with RSD. Her sister, husband and daughter are somehow always smiling and are good kind people.
Mary’s sister Carolyn has been caring for the family for over 6 years now. Carolyn and her parents have sold much of their belongings, downsized homes, and are working extra jobs to try to pay for the extensive medical bills and treatments. Unfortunately they are not any closer to paying off their unending medical debt.
I have only known Mary for 2 years but I have found her to be so deserving of anything we can do for her. I am asking for your grace, to help Mary and her family thwart off their staggering medical expenses and perhaps give her hope that she may someday be able to afford new treatments, and pay for the ones she has already had. ANY amount helps!
Mary and Eli before Mary was sick. Carolyn (Mary's sister), Mary, and Mary's little girl. Carolyn has make Mary and her family a priority in her life.Mary with Whipple's disease before RSD. Eli recovering from a near fatal car accident. He was close to having his foot amputated. Mary with the very rare Whipple's disease. Malnourished but still smiling!After Mary was diagnosed with RSD. She was on prednisone for the disease but there were many awful side effects including this picture... moon face.Mary's feet with RSD, a barbaric disease. Mary's feet burn like they are "stabbed, set on fire, & then run over repeatedly." Every day and every night she feels this pain. This quote is from the RSD awareness site
"This condition causes intense chronic pain, regarded to be more painful than natural childbirth, amputation, or terminal cancer pain. And for many, (like Mary) the pain is constatnt."
WEBSITE to visit about RSD:
www.rsdhope.org/beginners-guide-to-crps.html
Again... let's get her some help to pay for the treatments she has already had and for some new ones like the nerve stimulator that may give her some pain relief!
THANK YOU for visiting this fund!!
***ALSO Mary and Carolyn would love any information on how to get insurance to pay for these much needed treatments. AND please spread the word on RSD.
Organizer
Janeen Cornell Shave
Organizer
Freehold, NJ
