Help Bring My Daughter Back to Life

$31,291 of $100k goal

Raised by 317 people in 12 months
Evan Anhalt  HUNTINGTON, NY
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!
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Update 7
Posted by Evan Anhalt
28 days ago
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Hi everyone! It's time I tell you where I've been, no matter how difficult...

2016 was...not my year. My already failing health declined rapidly, I became allergic to almost everything in my environment and nearly all foods, no matter how benign. I couldn't eat solid food for much of the year due to a partial obstruction of my intestine. I became ravaged by excruciating joint pain. I almost completely lost my ability to walk and use my hands. My symptom list stretched to four single-spaced pages. I started fading fast as every system of my body broke down. Hospitals, doctor's offices (repeat)...no solutions. The IgG treatment became increasingly difficult to tolerate when it should have been becoming easier. Something was terribly wrong.

We discovered that I've been living in a black mold infestation for 35 years and happen to be one of the unfortunate few with some dreaded genetic defects (HLA "multi-susceptible," MTHFR, among numerous others) that make it impossible for my body to recognize or detox mold, Lyme, other biotoxins...or the hundreds of thousands of artificial chemicals in our environment/products most people don't react to. This means the accumulated poison of 35 years living in black mold, and every spritz of hairspray, every dryer sheet, every whiff of wall paint or car exhaust...and the toxic byproducts of hundreds of bottles of medication and anesthesia...are bathing, and destroying, every cell of my body. In a desperate attempt to fight the onslaught, my body is mounting an exponentially increasing inflammatory response. But since the detox pathways are broken, the response cycle cannot complete itself and inflammation multiplies without ever resolving. The pain is unbearable, constant, and growing.

I was ordered by doctors to leave my home, take none of my possessions, and buy an industrial strength HEPA vacuum, all natural replacement household products, furniture and clothing. This would be financially impossible for most healthy people, no less someone who has been bedbound and too ill to work for years. I currently stay in my new room with my salvaged TV, laptop, phone and a few articles of clothing. We used the last of the fund to buy me a safe mattress and cheap used dresser, but cannot afford any other furniture in the house. My dad and Casey have poured their hearts, souls and resources into helping me survive. All of our savings are gone.

Most of you know I'm deeply sentimental, and my home was my personal ever-evolving museum. I've saved every letter and every gift I've ever received. In the chaos I haven't yet even begun to mourn the loss of thousands of sentimental items, 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, so it's impossible at this time. We underwent extensive mold remediation and testing, followed by remediation and testing in the NEW apartment, which also tested positive for black mold! This added over $40,000 to my already astronomical medical bills.

This fund has provided life-saving immune therapy for me. But I'm at an impasse with treatment until I can begin an intravenous detoxification program to lighten the toxic burden causing my systems to fail. It's another huge expense, and unfortunately (since genetic medicine is in its infancy in this area) cannot be covered by ANY insurance plan. IgG alone, while necessary, cannot save my life. Though I was disheartened to find out just how badly I lost the genetic Lottery, we finally have answers and a chance to reverse some of the damage. If I make it through, I have big plans to transmute these experiences into a practice I hope will help many people who are lost and desperate to heal.

It pains me to add a crazy twist to this surreal journey. Everyone was so generous before we even knew the full story. As someone who was always much more comfortable giving than receiving, my heart nearly burst from the compassion and kindness offered to me when the fund was created. It lit the fire of survival and intensified my desire to pay it forward in ways I cannot remotely attempt to describe. It's incredibly hard to reach out for help again. But I would be very grateful if you would take a moment to share this page and get it circulating. Every penny helps. Much love and gratitude to you all!

~Dana
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Update 6
Posted by Evan Anhalt
7 months ago
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Hi everyone! Thanks to the incredible support I've received, I just had my second IgG infusion on Tuesday, and should be getting my third in two weeks! This infusion went a little better than the first. And I learned that after my initial tiny dose, my IgG level made a huge jump (some people have trouble getting their numbers up, but I seem to be quite responsive to this treatment!).

Also, after months on a strictly liquid diet due to a partial intestinal obstruction, I've been able to start eating a little bit of solid food again. I've gained 8 pounds since my dangerously low hospital weight back in May (I'm only 5'1", so 8 lbs is significant)!

THANK YOU ALL for setting me on the road to recovery as we fight for insurance! I cannot possible express all this has done for me.

Much love,
Dana
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Update 5
Posted by Evan Anhalt
8 months ago
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Hi, it's Dana. My apologies for the lack of updates. I was in the hospital for a while in May due to nerve/muscle dysfunction in the small intestine (I'm still on a 90% liquid diet because it hasn't resolved). Also, for two months my entire body felt like I'd fallen into a poison ivy patch and I was up round the clock itching. I became allergic to almost all of my meds and food. As it turns out, I also have a mast cell problem (those are the cells that release histamine in allergic reactions). We have to pin down exactly what type of mast cell disorder I have and get my histamine levels back to normal before I resume IgG treatment (this explains why I was very allergic to the IgG when I had my first small dose!).

As I wait for medical clearance to resume IgG (it's still the core of my treatment plan), this amazing fund has helped me afford mast cell stabilizing medication, which is quite expensive and also not covered by insurance and. I'm still so grateful every day for you all! Much love.
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Update 4
Posted by Evan Anhalt
10 months ago
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Hi everyone! After some delays for other medical complications I was able to get in for my starting dose of IgG yesterday! I cannot thank you all enough for making this possible. YOU ARE LIFE SAVERS! Please keep this link circulating. :-)

Love and Gratitude,
Dana
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$31,291 of $100k goal

Raised by 317 people in 12 months
Created February 8, 2016
$25
Lauren Hiltebeitel
3 days ago
$100
Anonymous
19 days ago
$50
Anonymous
22 days ago
MM
$50
MJ Moscowitz
22 days ago

Dana, sending love and strength to you!

$100
Anonymous
22 days ago
$40
Anonymous
23 days ago
$300
Anonymous
23 days ago
$50
Stephanie Yuhas
24 days ago
LM
$25
Lynn Messina
25 days ago

You continue to be in my prayers, Dana!

$50
Anonymous
26 days ago
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