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Help Hope Fight Lyme Disease

$21,171 of $100,000 goal

Raised by 263 people in 7 months
Created August 20, 2018
To know Hope is to love Hope. 

Hope managed to move herself from small-town America to Chicago around eight years ago. In this time, she's dedicated herself wholly to bettering her community. She has worked with trauma and violence victims on the Southside of Chicago. She has volunteered in pediatric units of hospitals all across the city. She started a 501(c)3 ( www.humorforhope.com) to help youth who are suffering from trauma and/or illness through the beauty of laughter. This organization took her to Africa and the Syrian border, working tirelessly to bring even the slightest bit of relief to children who need it most. She is so passionate about healing others that she put herself through a Master’s program in Clinical Psychology while doing all of the above. Hope has and will always put others before herself. 

Now it's our turn to put her first.

Hope has been recently diagnosed with Stage 3 Lyme disease. Doctors believe she's had it for years without diagnoses, which is common with Lyme. Symptoms include severe fatigue, muscle/join pain, and nausea. At this point it also effects the neurological system, making it hard to comprehend, communicate effectively and remember simple things. Given Hope's livelihood revolves around communication, it makes day-to-day tasks extremely difficult. This fundraiser will be raising money for Hope to utilize full Lyme treatment and therapy, including Ozone/UV therapy, functional medicine and traditional medicine. Ozone therapy infuses the blood with ozone, which increases the amount of oxygen in the body and, in turn, stimulates the immune system. This type of therapy has been extremely successful in the treatment of Lyme Disease; however, it's not covered by insurance companies.  Functional medicine offers a much more wholistic attack on the disease, providing much more thorough treatment, given the Lyme is now infecting the bloodstream and neurological system. The traditional medicine will offer Hope antibiotics through a PIC line. The rest of the funds will help to pay off the bills Hope has already accrued. Hope has been sick (and searching for answers) for the past two years (including a week-long stay at the (not) lavish Weiss Memorial Hospital) and, along with that, comes lots of doctors’ appointments and testing.

The reality is that she reached her limit financially a long time ago. Hope was searching for answers for the past two years without insurance, forcing an out of pocket pay. When she received insurance just six months ago, she was forced out of her job, then her apartment. Now she's at a point, even while working 80 hours a week, where she can't afford to pay for things like her car payment, gas and groceries. Credit cards are maxed out. There's nothing more she can do. This need is urgent.

Hope's friends are heartbroken to see someone who's always fighting for others, for the underserved, the silenced, the forgotten, be physically defeated by this terrible disease. I think we've all experienced the pain of watching loved ones not be able to access proper treatment because the people in charge wouldn't be making a profit off of it. It's so backwards. It's enraging. Traditional doctors hear "Lyme" and refuse to offer treatment, instead claiming it to be psychosomatic. We are reaching out because the healthcare system doesn't have Hope's best interest at heart. We know that, with this therapy and treatment, she can begin to feel like herself again and continue to conquer the world!

Financial Breakdown:

Ozone/UV Therapy: 

·      1 session: $310

·      5 times a week for the first week, followed by 3 times a week for 18 months: $67,000

Functional Medicine Appointments:

·      1 visit: $300

·      2 visits a month (on average) for 12 months: $7,200

·      Labs/testing: $3,000-$5,000

·      Treatment: $60,000-$80,000

Traditional Medicine:

·      PIC line and antibiotics: $600

Bills:

·      Weiss Hospital bills: $15,000

·      Family debt (rent, gas, food): $7,500

·      Car payment: $1,200

·      Credit card debt from medical bills: $15,000

We are asking for $100,000 in order to cover the past due bills and debt, along with getting Hope started on her treatment.

That sounds overwhelming, but if 400 people give $250, that's it. We are done. This is possible! 

Thank you. Thank you. Thank you.
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Hello all,

Hope here!
I just wanted to take a moment to get on here myself and update you all on my course of treatment and life that, thanks to you all, I've been able to stick around for :)

Two weeks ago it was recommended that I stop the treatment regimen that I was on due to the severity of the medication on my kidneys. Since then I've been tapering off that treatment and have since begun a new stage of treatment where the staff and I are attempting to build up to eventually being administered 10 treatments in 1 session. It can be brutal but I've made it up to 6 thus far before I was barfing in my back seat. Woo!
A 5 in 1 treatment session if I can stomach it cost approximately $500 and anything I can get to over 5 costs $850 per session. Yes, it's absurd but welcome to health care in America.

On the bright side, instead of coming in for treatment every single day like I have been for the past 7-8 months, this new stage will allow me to come in every week then taper down to every other week and then hopefully once a month or as needed until my brain and body are considered fully in remission. Unfortunately, advanced stages of chronic neurological Lyme cannot be cured but the hope is that with the proper attention and care that I will be able to maintain and get back to my life. - So far I'm feeling more like myself every day! And for those of you that know me well, you know I like to break the rules a bit and prove people wrong so I fully plan on absolutely kicking Lymes ass and not stopping until the job is done!

As many of you know, I lost my job and health insurance again in December so that was another set back, but thankfully I have wonderful friends who feed me and let me live with them, as well as an incredible community of people around me like you all, who have allowed me to stay afloat.

I am laughing again, coming up with ideas, brain storming, being social and just last week I got a new job!

I can't ever begin to explain to you all how grateful I am for your unwavering and relentless support this past year. You've each changed my life in ways you can't even begin to imagine. Your generosity has truly been astounding. On my darkest days, when nothing was working and my brain and body felt completely broken and I was deep in the pit of despair, it was this community that gave me strength to keep trying.

Thank you for caring, thank you for showing up in all the ways you all have and thank you for your continued support moving forward. I wouldn't have been able to do this without you all. Your kindness has moved me in ways that will carry over into my work at Humor for Hope and beyond. In a funny way, this illness has made me better. It's left me more open, raw and accepting of love and all the grief that goes along with it.

For those of you who use social media, I update more often on my instagram. My name there is @Hoperah. I will continue to update here every so often as the journey continues to unfold but for now, I am focusing on finding my footing again and rebuilding in such a way that allows me to pay your kindness forward.

Thank you for seeing me, thank you for accepting me and thank you for always quietly ushering me forward.

With mad gratitude,

Hope
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First, I just want to say thank you to everyone who has donated, shared, and sent positivity Hope’s way.  It has been such a blessing to have so many people offer help at a time when the future seemed very bleak. Your support has given Hope access to the most aggressive treatment around so she is able to have the best chance at beating late stage Lyme and a myriad of co-infections.  

It’s been almost 130 days since Hope started treatment. While the beginning was rough and we became frequent ER visitors (too bad they don’t have a loyalty program), the past few weeks Hope has slowly started to experience some healing and relief from her symptoms. She still has some rough days but this is great news and an indication that her body and brain are responding to treatment and slowly clearing the various infections. She has a few more weeks to go on this protocol so we are hopeful that she will continue to improve and that her final test results will show remission for the Lyme and various neurological bacterias and co infections.

We are also so happy to report that Hope received a negative MS diagnosis, got good results from her spinal tap and that the spots on her ovaries, with the help of daily rounds of IV therapy and infusions, have since gone away.

What we don’t know yet is what the future will look like. Unfortunately late stage Lyme cannot be cured, so depending on how she feels at the end of treatment, her team of doctors will come up with a plan to best maintain her health moving forward. This will most likely include a combination of immune boosting supplements, monthly IV treatments and continued monitoring by her doctors to ensure she remains in remission.

For this reason we continue on this GoFund Me journey, a bit unsure of what the next 12 months hold but with a positive outlook and a determination to get Hope back to her usual hilarious & wonderful self. If you’re able to continue sharing we are so appreciative and we can’t say thank you enough to our people who have helped us so far. We wouldn’t have been able to do this without you all.

Thank you, thank you, thank you!

-Colleen, Hope's lyme brain & team
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Sometimes holidays like Thanksgiving are spent amongst smorgasbords of friends, family, chaos, laughter and love. And sometimes they’re spent hooked up to an IV, alone in a dark room, staring up at someone else’s ceiling while counting out pills and supplements and getting blood drawn while simultaneously thinking of all the people you love that make life worth living.

I am thankful for you all, for what each and every one of you have added to my life. You’ve helped shape and mold me in ways that words simply don’t do justice. And because of that, I am actually thankful to be laying here tonight all hooked up and snuggled in with Theo because it means that I’m still here, that I’m still fighting and THAT is a beautiful thing. I wouldn’t have this opportunity without you all and your support. You have been my horizon when the waters become murky and unsteady, you are what keeps me afloat and I wouldn’t be where I am today without you. Thank you for being my people and for adding all that you do to the lives around you, especially mine. I feel so overwhelmingly grateful.

I’m still fighting. Still trying to find the joy and light within the dark. It’s an uphill battle right now but thank you for making it easier. - Will update more soon!

Happy Thanksgiving friends,

- Hope
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Back with another update for our girl Hope!

This week Hope finished her third week of daily IV treatment. We’ve logged a little over 50 hours and 500 miles (thank God for the Prius!) sitting in and going to / from the treatment center.

She continues to have good days and bad days. Unfortunately the bad are more prevalent than the good right now but the doctors assure us that’s to be expected during this time.

Hope's neurologist also reviewed her MRI scan and EEG with us this past week and reported back that she has some concerns based on some abnormalities she saw. The scans showed that Hope has slowing in the left temporal lobe of her brain (think information retrieval, reading and comprehension, processing sounds and written words into meaningful information, emotional stability, memory, sensory processing, feelings of conviction and insight). She suspects that in addition to battling the Lyme & co-infections, Hope needs to be tested for ovarian tumors and encephalitis or some sort of auto-immune condition that is causing inflammation in her brain and contributing to her cognitive difficulties. She recommended both a spinal tap and further blood tests to determine what exactly may be going on so tomorrow morning Hope will go to Northwestern to get those things done.

Hope's team at the IV treatment center is also going to send additional blood tests to the Mayo Clinic to look for more information on why her immune system seems so depressed. What we did learn this week is that Hope has a gene that makes it very difficult for her body to detoxify or clear toxins and she also isn't absorbing water so she's constantly dehydrated. So in addition to the IV therapies, Hope will also start on a few different binding agents to help her be able to pass the toxins out of her body. (woo fun!)

It has been a tough week with several late night ER visits accompanied by many unknowns but Hope is managing it like a champ and taking it as it comes.
She reports that besides neurological symptoms, headaches, Brett Kavanaugh & Lindsey Graham, and side effects from the medication, the worst part right now is worsening air hunger that makes her easily winded when doing things like brushing her teeth or walking. -- Don't worry though, her teeth are getting brushed!

As always, thank you for following along, for donating, for sharing and for reaching out.

Please, if you can, we could use help sharing the GoFundMe. We have hit a bit of a wall and as more intensive testing is required, we need more help. Sharing it with your networks is immensely helpful!

Thank you, thank you, thank you for helping support Hope.

We will update again soon.

Colleen, Katie & team.
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$21,171 of $100,000 goal

Raised by 263 people in 7 months
Created August 20, 2018
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