Help Bring My Daughter Back to Life
Donation protected
My daughter Dana has been increasingly ill since she was a child. Her symptoms eluded diagnosis for decades and got so severe that she became bedridden with full body pain. Terrible neuropathy left her unable to use her hands, even for simple tasks. She could barely walk. Her jaw nearly swelled shut from intractable pain and inflammation in the masseter muscle (which remains to this day). For many years now, she's been isolated and imprisoned in a body that can hardly move, type, chew or speak.
In this weakened state, Dana had multiple life-threatening open surgeries for spontaneous intestinal trauma. At many points in her 30's, she weighed only 70 lbs. Doctors in the most prestigious hospitals in the country told her nothing could be done...to "keep herself comfortable" with morphine as she waited to die.
After half a lifetime of unremitting pain and upwards of 100 doctors, in 2015-2016 she was diagnosed with Common Variable Immunodeficiency (CVID), chronic Lyme disease and multiple co-infections, severe Chronic Inflammatory Response Syndrome and Mast Cell Activation Syndrome. Through the incredible generosity of donors here, we were able to use the first $30k to start her on IgG (immune) therapy as we battled for insurance coverage. But it turned out that wasn’t the whole story…
In 2016 she declined rapidly, became allergic to almost everything in her environment (including foods and medications), couldn't eat solids for 7 months, became overwhelmingly intolerant to smells, tastes and touch, and was ravaged by constant excruciating joint pain. Her skin itched and burned so badly that it sometimes kept her awake for 10 days straight. Every system of her body rapidly broke down and her symptom list stretched over 4 single spaced pages. Test results became increasingly alarming.
We discovered she’s been living in a covert black mold infestation for 35 years and happens to be one of the unfortunate few with some dreaded genetic defects (HLA "multi-susceptible," MTHFR, among numerous others) that make it impossible for her body to recognize or detox mold, Lyme, many medications, and the hundreds of thousands of artificial chemicals in our environment/products. In a desperate attempt to fight a lifetime of toxic buildup, her body is mounting an exponentially increasing inflammatory response. But since the immune system and detox pathways are broken, the response cycle cannot complete itself and inflammation multiplies without ever resolving. The pain is unbearable, constant, and growing. She’s literally being poisoned to death from the inside out.
Doctors ordered her to leave her home, take no possessions, buy industrial strength HEPA equipment, and completely restock her home with 100% non-toxic, organic/natural furniture, products and items (even all this won’t help her without special intravenous detox). This would be financially impossible for most healthy people!
Dana is a deeply sentimental person. She hasn’t yet begun to mourn the loss of a lifetime of letters, gifts, family heirlooms, collections, artwork, artifacts, handmade projects, journals, etc. Perhaps a few items can be saved, but it's very costly to have them cleaned properly, thus impossible at this time. We underwent extensive mold testing and remediation, followed by the same process in the NEW apartment, which unbelievably also tested positive for black mold! This added to the already astronomical medical bills over $40,000 (and pending $40,000+ in home repairs, since whole walls have to be torn down/gutted, before we can sell the house to help with costs).
Through all of this pain, frustration and loss, Dana has never played the victim. She’s been a source of selfless light, compassion, creativity and wicked sharp wit. She's a gifted writer, an advocate, insatiably curious student, artist, nurturer, and most notably, a deeply insightful healer and empath. She sees beauty everywhere, in things most people take for granted. Everyone feels cherished, validated, understood and loved in her presence. In the face of death her greatest regret is not what SHE missed in life, but the missed opportunities to be there for her friends and family in person for the moments that mattered to them.
To give a few examples of her spirit: while bedbound and barely able to communicate, she launched SacredScars.org ; a body-positive community (and soon to be printed book) celebrating the beautiful imperfections that comprise our unique personal mythologies. She kept up the art blog SheWalksSoftly for 9 years, and when that became too painful began sharing art all day on Instagram, even with her hands in bandages. She’s eager to be of service and move forward with her career in integrative Depth Psychology. Dana has SO much passion, love and wisdom to share.
This fund has been a Godsend, and we are eternally grateful. But she’s at an impasse with treatment until she can begin an IV detoxification program to lighten the toxic burden causing her systems to fail. It's a tremendous expense, and unfortunately cannot be covered by ANY insurance plan. She is dying...excruciatingly painfully. No one should have to suffer the way Dana has. Please help my beautiful daughter come back to life!
In this weakened state, Dana had multiple life-threatening open surgeries for spontaneous intestinal trauma. At many points in her 30's, she weighed only 70 lbs. Doctors in the most prestigious hospitals in the country told her nothing could be done...to "keep herself comfortable" with morphine as she waited to die.
After half a lifetime of unremitting pain and upwards of 100 doctors, in 2015-2016 she was diagnosed with Common Variable Immunodeficiency (CVID), chronic Lyme disease and multiple co-infections, severe Chronic Inflammatory Response Syndrome and Mast Cell Activation Syndrome. Through the incredible generosity of donors here, we were able to use the first $30k to start her on IgG (immune) therapy as we battled for insurance coverage. But it turned out that wasn’t the whole story…
In 2016 she declined rapidly, became allergic to almost everything in her environment (including foods and medications), couldn't eat solids for 7 months, became overwhelmingly intolerant to smells, tastes and touch, and was ravaged by constant excruciating joint pain. Her skin itched and burned so badly that it sometimes kept her awake for 10 days straight. Every system of her body rapidly broke down and her symptom list stretched over 4 single spaced pages. Test results became increasingly alarming.
We discovered she’s been living in a covert black mold infestation for 35 years and happens to be one of the unfortunate few with some dreaded genetic defects (HLA "multi-susceptible," MTHFR, among numerous others) that make it impossible for her body to recognize or detox mold, Lyme, many medications, and the hundreds of thousands of artificial chemicals in our environment/products. In a desperate attempt to fight a lifetime of toxic buildup, her body is mounting an exponentially increasing inflammatory response. But since the immune system and detox pathways are broken, the response cycle cannot complete itself and inflammation multiplies without ever resolving. The pain is unbearable, constant, and growing. She’s literally being poisoned to death from the inside out.
Doctors ordered her to leave her home, take no possessions, buy industrial strength HEPA equipment, and completely restock her home with 100% non-toxic, organic/natural furniture, products and items (even all this won’t help her without special intravenous detox). This would be financially impossible for most healthy people!
Dana is a deeply sentimental person. She hasn’t yet begun to mourn the loss of a lifetime of letters, gifts, family heirlooms, collections, artwork, artifacts, handmade projects, journals, etc. Perhaps a few items can be saved, but it's very costly to have them cleaned properly, thus impossible at this time. We underwent extensive mold testing and remediation, followed by the same process in the NEW apartment, which unbelievably also tested positive for black mold! This added to the already astronomical medical bills over $40,000 (and pending $40,000+ in home repairs, since whole walls have to be torn down/gutted, before we can sell the house to help with costs).
Through all of this pain, frustration and loss, Dana has never played the victim. She’s been a source of selfless light, compassion, creativity and wicked sharp wit. She's a gifted writer, an advocate, insatiably curious student, artist, nurturer, and most notably, a deeply insightful healer and empath. She sees beauty everywhere, in things most people take for granted. Everyone feels cherished, validated, understood and loved in her presence. In the face of death her greatest regret is not what SHE missed in life, but the missed opportunities to be there for her friends and family in person for the moments that mattered to them.
To give a few examples of her spirit: while bedbound and barely able to communicate, she launched SacredScars.org ; a body-positive community (and soon to be printed book) celebrating the beautiful imperfections that comprise our unique personal mythologies. She kept up the art blog SheWalksSoftly for 9 years, and when that became too painful began sharing art all day on Instagram, even with her hands in bandages. She’s eager to be of service and move forward with her career in integrative Depth Psychology. Dana has SO much passion, love and wisdom to share.
This fund has been a Godsend, and we are eternally grateful. But she’s at an impasse with treatment until she can begin an IV detoxification program to lighten the toxic burden causing her systems to fail. It's a tremendous expense, and unfortunately cannot be covered by ANY insurance plan. She is dying...excruciatingly painfully. No one should have to suffer the way Dana has. Please help my beautiful daughter come back to life!
Organiser
Evan Anhalt
Organiser
Huntington, NY