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76 yr old Mom needs help

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I am now a 78 yr old Mother and an RN, trying to care for my disabled daughter. I am her sole caregiver. I was 76 years old when I started this fundraiser about 2 years ago. I worked full time until I was 75 years old but I had to ultimately quit working as an RN, a career that I loved, because Julie was incapable of caring for herself.
In 2011, she was bitten by a tick, leaving her with horrible repercussions.  ️ 
She had been on antibiotics for 19 yrs, leaving her with a severely compromised immune system. She wasn't treated for 11 mos., even though I took her to the MAYO Clinic. (She saw the head of the Infectious Disease Department.
I thought I was doing everything possible to get her the best care but even that Dr. missed her dx ((diagnosis)).  She was only tested for the family of Coxsackie "A" viruses bc in her opinion, the type"B" was too rare to be considered.
Of course, when we got back from the MAYO Clinic, Julie continued to get sicker and sicker.
She was hospitalized AGAIN and she had to literally beg the local Infectious Disease doctor ((who was a colleague of mine)) to test her for the Coxsackie B type viruses.
Of course she tested positive for Coxsackie B4 virus. It's in the same family of viruses as POLIO and as a result, has lost most of the use of her left side. Because the tick bit her on the left side of her head, behind her left ear, it's unclear how much of the neurological damage is from the tick, the Coxsackie B4 virus, or most likely a combination of everything.)
By the time she was finally treated correctly /diagnosed, the bacterial infection from the tick had also entered her spinal fluid and brain.  She contracted Ehrlichiosis Chaffeensis, Rickettsia, and was later diagnosed with Lyme Disease.
She's had to have (8) EIGHT Spinal Taps to drain the fluid and ease the pressure on her brain. She will be getting her 9th soon or, as one of her neurologists wants to do, have a brain shunt put in.
Her new and quite wonderful Infectious Disease specialist doesn't want her to get the brain shunt bc she's worried about future infections. 
Julie is in constant pain. It's breaking my heart as her Mother, and as an RN and not being able to do something to help. 
The Coxsackie B4 virus is cousin of polio.
She's lost most use of her left side. On her good days she uses a walker and on bad days, she has to use a wheelchair which I push.
During one of her numerous Hospital stays, she contracted Vanc.-resistant C. Difficult. She fought it for 3.5 years but ultimately needed 2 Fecal Matter transplants to save her intestines and her life. The 1st one failed and we were terrified she was dying.  She made it after the 2nd one but it has been such a struggle.
She was left with adhesions/scar tissue throughout her intestines and can no longer DIGEST food or absorb nutrients from her food without an enteral food RX.
It's called EnteraGam. It costs $1600/Mo but she gets a pharmaceutical scholarship from the manufacturer. 
It currently costs $198/Mo.
We can't afford it.
We have both worked our entire lives, helping others. I am an RN.
I worked until I was 75 (last year). I have 2 titanium knee replacements and arthritis.
I have to help my daughter bathe and dress. I cook, clean, and do all the housework. My daughter can't drive because she has fused discs in her neck, had a grand mal seizure, has double vision, and post viral syndrome.
She was an active trial lawyer before she was bitten by the tick.
She worked at a shelter for abused women and children; when in undergraduate school, she ran a childcare program for low income and disabled children.
I have cared for people my entire life.
I need help. I am having trouble loading and unloading her walker and wheelchair. 
I can't afford her RX @$198/Mo. that allows her to digest food.
We used to get $72/month for food but this administration cut it to $66/mo for food.
I am also trying to save our home. We live(d) off of credit cards after we went through our life savings (over $120,000 plus) on Julie's healthcare before the ACA.  
She needs her lifesaving medicine, EnteraGam, for the rest of her life. It's considered 'outside of her formulary' and so it is not covered by insurance. Approximately 6-8 months ago, @goodrx mailed us a check for$400, as a measure of goodwill because she can only get her RX through the manufacturers pharmacy. It's called the hub. 
I am terrified of leaving Julie without appropriate care, without her lifesaving medicine, and homeless.
As I have previously said, before the ACA, I went through my life savings of over$120,000 on her medical bills.
From the trip in which I took her to the Mayo Clinic, I am still paying that bill of over $9000. 
It's unreal what we have gone through the past 9+ years.
I have already lost my only other child-her brother, when he was 19, she was 14, and I was just 39.
I had to take my nursing boards 2 weeks after I buried my firstborn son, my baby.
My husband was recently disabled at the time, having had 9 surgeries, including 6 back surgeries. ♿️
I became the sole bread winner and Julie and I both became HIS caregivers.
Julie was sworn in as an attorney in October 1998 and in December 1998, my husband was diagnosed with terminal cancer.
Julie closed her law office, moved back home and became his full-time caregiver. I had to continue working to keep our family together. ‍‍‍ - ‍❤️‍
I ultimately lost my beloved husband of 40 years to cancer.
I CANNOT lose my daughter.
I am trying to save our home.
Not only is it our last link to my son and husband/ Julie' brother and Father, but because I am worried about leaving her homeless.
Please help me.
I have to raise $198/Mo , every month for her EnteraGam and also raise money for food, daily living bills, and my home.
I want to be able to die in the same bed as my husband and leave my daughter in as little debt as possible.
Right now I need help buying her lifesaving medicine EnteraGam, food for ourselves, and our dog and cat.
Certainly they shouldn't have to suffer as well. Earlier this year, an angel bought us 2 bags of dog and cat food but they will need more.
As most of you know, food stamps (SNAP) don't pay for the daily necessities such as toilet paper, paper towels, cleaning supplies, Kleenex, baby wipes, etc. Of course they don't cover food or treats for our dog or cat.
Our dog was just a few months old when Julie was 1st hospitalized.
Our puppy spent the first months of her life in and out of her crate with me running back and forth between the house and puppy and the hospital... , Our cat is a rescue. 
We had a rescue dog who got off her leash in our backyard. She was starving when we rescued her and she would try to eat anything. Julie would take her in the backyard on a leash so she wouldn't eat anything harmful. After she got off her leash in 2011, Julie ran into the bushes to get her. 
Both Julie and Scout, our rescue dog were bitten by ticks. Even with her tick prevention drops, Scout died the next day from Ehrlichiosis Chaffeensis.   
We got our current furbaby a few months later and our rescue kitten about 4 years ago. 
This is a living nightmare for us all. 
Please help.
Anything and everything helps.  
Even$10 or just sharing our story to Facebook, Twitter, LinkedIn, Pinterest, etc. will help. 
Thank you so much for anything you do.  
She is my heart and my heart is breaking.
We wouldn't make it without you all. Our friends on here have been our salvation, both spiritually, emotionally, and of course, financially.


  • Anonymous
    • $50 
    • 4 yrs


Carolyn Evans
Louisville, KY

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