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.
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.
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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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.
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
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!
I pray Holly gets all the help she needs.
Can u give me some vice on how to get donations for my dad please
Holly, I am praying for you this morning hoping you will get some answers at the Mayo Clinic this week. Good luck!
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.
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
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.