Helping Holly

$61,069 of $75,000 goal

Raised by 598 people in 42 months

You know those rare people who actually make you a better person when you hang out with them? Our sweet friend Holly Todd is one of those. She is a genuinely compassionate, giving person who would do anything to help you- even if she didn't know you. In February of last year, Holly went on a missions trip to Haiti where she and the team from Valley Chapel Church in Warsaw, NY built a house for a widow and cleared land and constructed a nursery to be used in helping with reforestation efforts. Holly was used by the Lord to bless so many people, however, because of a bee sting she got while working she was struck with a rare condition described as Dysautonomia. Many of you helped us to raise money for Holly last year so that Holly could actually get a diagnosis.  This allowed her condition to stabilize somewhat.  Since that time, she has received a feeding tube, worked on physical therapy, and tried many other things to continue getting better. Unfortunately, despite everyone's best efforts, she is stalled at a stage where doctors have no more answers for her and although she is stable now, she is not getting better.  She has discovered a new treatment that may help to get her going in the right direction, but she needs our help again to help her get there.  Would you consider reading what Holly has written about this new treatment and donate so we can help our friend pay her medical bills and possibly get the help she needs? Her insurance will not cover the high costs of being seen at a facility out of state but we believe that this treatment could help substantially. Thank you for your kindness and generosity. Please join us in praying for our friend Holly as she waits on this new possibility.  

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Hey friends of Holly! It has been a while since I have posted anything on this gofundme account. Thankfully, we reached our goal to help Holly last year and she got a diagnosis and some help to stabilize her condition. Unfortunately, she is still not progressing toward full health and is running out of answers. Below is a description of a procedure that Holly believes could help her get going in the right direction. Unfortunately, like before, her insurance won't cover the high cost of treatment out of state. If we could just rally together and finish out our original goal she would have more than enough to possibly get a chance at progressing toward health. Please read below to hear from Holly about this opportunity:

Hi everyone, Holly here!

First and foremost, I wanted to express my extreme gratitude for all of the help and support this past year. You’ve all pulled together in amazing ways to LITERALLY save my life. If it weren’t for this gofundme page and the hard work of some really amazing people, I never would have been able to afford to get to the Mayo Clinic for my diagnosis and treatment plan.

As most of you know, in early February 2015, my feeding tube was placed. The dynamic combination of feeding tube delivering nutrition to my body and Physical Therapy converting that fuel into muscles has been absolutely invaluable. I’ve improved in leaps and bounds and am miles (both figurative and actual miles) ahead of where I was when I returned from Minnesota in January. I’ve gained some weight, am no longer malnourished, and have increased my stamina to such an extent that I’ve been able to walk a couple of 5k races.

So why am I here? I began my IVIG treatments shortly after the feeding tube was placed. These treatments were Mayo Clinic’s best hypothesis at improving my symptoms. They were experimental and we all crossed our fingers that they’d bring relief to some or most of my symptoms. Unfortunately, by mid-May, the IVIG treatments had done all they could do. They came to a screeching halt and that’s where my frustrations really began. Since May, I’ve been “treading water” so-to-speak. I’ve been following up with different doctors about once a month, but we’re no longer making progress. I’m still not able to eat normally and rely mostly on my feeding tube to maintain my weight. I’ve struggled, internally, for quite some time now. I’m so frustrated that I can still not enjoy eating normally. I haven’t let it stop my life (I’m engaged for those of you who don’t follow on facebook!). I’m just at the point where I’m ready to be done with this chapter of my life and I’m more than ready to have my feeding tube removed.

In order to get that tube removed though, I need to be able to eat. Otherwise, we’ll be back at malnourished faster than you can say “Thanksgiving Dinner!” Myself and friends have done a lot of research into finding different treatment options. There are a whole lot of experiments out there, and even a few Dysautonomia clinics in places like Texas, New York City, Cleveland Clinic, etc etc etc. In our research, I keep coming back to one in particular. It’s called TVAM and the procedure is done in California. I’ll do my best to briefly describe what will potentially happen.

I fly to California on a Sunday.
Monday - I go to meet the doctor in person and do all of the initial screenings and preparations for the procedure.
Tuesday - I go in to have the TVAM procedure. Spend the rest of the day/night recovering at the hotel room.
Wednesday - I go in for a follow up with the doctor to make sure everything has gone well.
Thursday - barring any obstacles or adverse reactions, I fly home.

Probably the easiest way to describe the TVAM procedure is to copy/paste the information directly from the source:

TVAM (Transvascular Autonomic Modulation) is an endovascular procedure in which a catheter is inserted via a small incision and threaded up into the jugular vein. Treatment involves stretching the vein with small catheters, activating autonomic nerve fibers located within the outer tissues of the vein. By stimulating the nerve fibers, we activate the venous distension reflex leading to increased sympathetic tone. The reinvigorated ANS (autonomic nervous system) optimizes function of the body. Patients respond with relief from cognitive impairment (brain fog), chronic fatigue, waking headaches, thermal intolerance, bladder/bowel dysfunction, and other debilitating symptoms of autonomic dysfunction (Dysautonomia).
The basis of TVAM is the venous distention reflex (VDR) Venous Distension Reflex. Our clinical experience supports this theory, we believe that the benefits of the treatment may come through stimulation of the afferent autonomic nerve fibers encasing the jugular vein. These nerve fibers are stimulated during the procedure. By activating the VDR sympathetic function improves leading to symptom relief for treated patients.
So, while it feels incredibly selfish to ask you all to continue to support me financially, I need help raising the funds to get this treatment. I have a strong sense of this is what I need to do. I’ve felt very positive about the procedure since my phone consultation with the doctor back in June. I was mentally prepared to go then, but Dad needed some time to get on board. Neither one of us was keen on asking the community to support another experimental treatment. I just can’t let it go though, I feel that I NEED to give this a shot. I just know deep down that this is going to work. While there are no cures for Dysautonomia, having relief of symptoms to the degree that I could have the feeding tube removed would dramatically improve my quality of life.

If you find it in your heart, please support me. Most importantly in prayer, in positive vibes, in encouraging words, and by spreading the word about Dysautonomia in the pursuit of a cure someday.

Thank you again, from the bottom of my heart, for all of the ways you’ve shown me love and support.
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Hey everyone! Your funds have helped Holly go from not having a diagnosis to having a diagnosis and finding a treatment plan. But as many of you probably know from Facebook and other places, Holly is stuck again. She seemed to be at a point where treatment was finally going to be able to start, but after placing the feeding tube she needed, her treatment was denied because of insurance issues again. I know so many of you have already given so much to help Holly get to where she is right now. For some people, you may still have some resources to be able to give to help Holly progress with treatment faster. I know that she is so thankful each and every time someone gives. For others, I know you may not have more to give financially, but I would ask you to still be praying for her and continue to spread the word. Pray that God would sustain her right now and that doors would still be opened. Thanks for your support of Holly!
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As many of you have probably heard, Holly was given a diagnosis today. Praise the Lord! In Holly's own words:

WE HAVE A DIAGNOSIS!!!!!!!!
Dysautonomia and neuroimmunology - in layman's terms: the bee sting triggered my body to start fighting itself. 3-6 months of immunotherapy infusions will get me back on the road to health!!



I just want to thank you all so much! You were a big part of the reason that Holly was able to get this diagnosis...so thank you for your generosity. She will have a long road of treatment ahead, so please continue to pray for her, share this fundraiser and give if you are able to, so she can receive the treatment she needs. Thank you again!
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Hey everyone! Hope you had a great Christmas! Thanks so much for all that you have done for Holly so far. She is so thankful to everyone for the amazing outpouring of love on her behalf. Just as an update, she did make it to Mayo Clinic today in Minnesota. She had an initial appointment with a doctor and she was thankful for the interaction she had with him. He recognized the seriousness of her disease saying that she only had months to live if this disease is not treated, made it very clear that it was not some kind of psychological problem but a disease of some kind, and started to put together a plan of action for some testing. So the day was encouraging because there was some movement. Unfortunately, when they went to billing, they discovered that there was a misunderstanding with costs and the money that she had would only cover tests up through Monday. So although the doctor wants to see her through Jan. 5, she only has the funds to get through Monday. You were a major part of getting her there and getting the funding to get her started in testing. We just need to pray that she can raise more money on here, find some alternate funding, or find a way to have her insurance cover some of the costs. If you could please be so kind as to share this again just to open the way for some more funding that would be great! And if you or someone you know has any knowledge that would help Holly find some charitable funding or deal with the insurance headache, please contact us here or send Holly a message. Thanks so much!
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Read a Previous Update
Marie Connell
31 months ago

Hi Holly and friends and family wishing to help Holly. I have something I want you to take a look at: dkc.energy526.com This 1.5 billion dollar company is helping change the lives of people all across America, people helping people. If this makes sense to you, let's get started funding Holly's surgery. We do this as a team and I will help you. Note: the $429 franchise like fee has been waived until Nov. 20 ($0 enrollment fee!) (If you research and see the consumer affairs posts, it is a for-profit lawyer referral site and only posts negative reviews unless you pay an enormous fee for positive posts. This is not a scam or pyramid scheme. Reliable research is found on the company website: click on about tab, then look at: newsroom/awards/press releases/fact sheets.)

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Melissa Ratliff
41 months ago

Hi, I Tried to send Holly a Facebook message but I'm not sure if she got it. I am 29 living in the Rochester area and I have had dysautonomia since 2012.

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Amy Fuller Esteban
42 months ago

I pray for you holly ! I know you wean we wear kids ! I wish you the best with everything ! God will bless you and your family

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Karrie Robins-Tavano
42 months ago

Most insurance companies allow families or individuals to change their insurance one time a year...usually through the months of November and December, and the changes take place on January 1st. Sometimes changes could include benefits out of state. I know it's probably to late now, but it's worth looking into. Hang in there Holly...best of luck to you!

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Ebony Hope
42 months ago

I pray Holly gets all the help she needs.

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Veronica Rangel
42 months ago

Can u give me some vice on how to get donations for my dad please

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Anita Berger
42 months ago

Holly, I am praying for you this morning hoping you will get some answers at the Mayo Clinic this week. Good luck!

+ Read More
Tiffany Hubbard
42 months ago

I would like to possibly help you with the insurance aspect of this. I work in this industry and may be able to figure out a way to have her insurance cover the treatment. Please feel free to friend me on Facebook and I will do what I can to point you in the right direction.

+ Read More
Kelsey Calhoon
42 months ago

This sounds all too familiar with the disease ALS.... Has she looked into that? I pray that is it something better off. Best of luck to you all and merry Christmas

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Joanne Nowak
42 months ago

I watch that show "Monsters Inside Me" all the time and there are so many parasites from different countries...research them all..it can be so many things. I work at Villa Maria College and I remember Holly and I am heartbroken for her but wish her all the best in the world. Whatever this is, you can beat it Holly.

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$61,069 of $75,000 goal

Raised by 598 people in 42 months
Created December 10, 2014
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$55
Anonymous
12 months ago
$100
Anonymous
28 months ago
$20
Anonymous
31 months ago
$50
Anonymous
31 months ago
SG
$50
Sandy (Flint) Gibbs
31 months ago

Still praying from Maryland. If your gut is telling you this is it, follow your leading.

$10
Anonymous
31 months ago
Marie Connell
31 months ago

Hi Holly and friends and family wishing to help Holly. I have something I want you to take a look at: dkc.energy526.com This 1.5 billion dollar company is helping change the lives of people all across America, people helping people. If this makes sense to you, let's get started funding Holly's surgery. We do this as a team and I will help you. Note: the $429 franchise like fee has been waived until Nov. 20 ($0 enrollment fee!) (If you research and see the consumer affairs posts, it is a for-profit lawyer referral site and only posts negative reviews unless you pay an enormous fee for positive posts. This is not a scam or pyramid scheme. Reliable research is found on the company website: click on about tab, then look at: newsroom/awards/press releases/fact sheets.)

+ Read More
Melissa Ratliff
41 months ago

Hi, I Tried to send Holly a Facebook message but I'm not sure if she got it. I am 29 living in the Rochester area and I have had dysautonomia since 2012.

+ Read More
Amy Fuller Esteban
42 months ago

I pray for you holly ! I know you wean we wear kids ! I wish you the best with everything ! God will bless you and your family

+ Read More
Karrie Robins-Tavano
42 months ago

Most insurance companies allow families or individuals to change their insurance one time a year...usually through the months of November and December, and the changes take place on January 1st. Sometimes changes could include benefits out of state. I know it's probably to late now, but it's worth looking into. Hang in there Holly...best of luck to you!

+ Read More
Ebony Hope
42 months ago

I pray Holly gets all the help she needs.

+ Read More
Veronica Rangel
42 months ago

Can u give me some vice on how to get donations for my dad please

+ Read More
Anita Berger
42 months ago

Holly, I am praying for you this morning hoping you will get some answers at the Mayo Clinic this week. Good luck!

+ Read More
Tiffany Hubbard
42 months ago

I would like to possibly help you with the insurance aspect of this. I work in this industry and may be able to figure out a way to have her insurance cover the treatment. Please feel free to friend me on Facebook and I will do what I can to point you in the right direction.

+ Read More
Kelsey Calhoon
42 months ago

This sounds all too familiar with the disease ALS.... Has she looked into that? I pray that is it something better off. Best of luck to you all and merry Christmas

+ Read More
Joanne Nowak
42 months ago

I watch that show "Monsters Inside Me" all the time and there are so many parasites from different countries...research them all..it can be so many things. I work at Villa Maria College and I remember Holly and I am heartbroken for her but wish her all the best in the world. Whatever this is, you can beat it Holly.

+ Read More
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