Help with medical expenses for 9 day PT intensive

$21,320 of $35,138 goal

Raised by 183 people in 16 months
Hello everyone,

As many of you probably know already I experienced a pulmonary embolism late in April of this year. That’s a fancy way of saying that a blood clot, 27 of which were in my left leg, found its way up into my right lung resulting in a short period of death. I was revived by a team of doctors and was put in a hypothermic coma for 10 days. Luckily, I had really good medical care at the local hospital in Prescott, Arizona. I am incredibly fortunate to still have excellent brain function due to the quick actions of my family and all of the emergency responders that night and in the ensuing weeks.

As a result of my time without oxygen, I have been diagnosed with a rare disorder called post-anoxic or post-hypoxic myoclonus. After being in the hospital in Prescott for over 6 weeks, I was transferred to a nuero-rehabilitation facility, Barrow’s, in Phoenix. After 40 days at Barrow’s I was discharged, still in a wheel chair, with limited progress towards solving the myoclonus. I returned to Prescott to continue my healing, which is going slowly.

The main issue is that my brain is not sending the messages to my body to move correctly. Simply, the myoclonus is a severe movement disorder. I can no longer walk and I cannot stand without substantial help. Most activities of daily life such as food prep, toileting, and even holding a glass range from difficult to impossible for me at the moment.

I am receiving occupational and physical therapy in home several times a week. I am starting to make slow progress feeding myself with a fork and a spoon. I am fortunate to have a very open minded and excellent neurologist who is willing to try many different avenues to healing. He thinks that my pulmonary embolism may have strengthened the effect of any pre-existing conditions or infections in my body. I am continuing to treat Lyme and I am obviously faced with an entirely new set of physical challenges. There is no doubt that this journey will be a very long one and I am focused on my full recovery.

I am fortunate to be covered under my father’s insurance, at least until next July. However, the insurance does not cover all the expenses and treatments. The ones that are most promising, require additional funds. I am happy to write that I’m preparing to travel on September 5th to meet with one of the top doctors and researchers for myoclonus in New York City! I’m blessed to have this opportunity and will continue to provide updates as I know them. As you all may imagine the cost of my care, transportation and medicine are huge and will be ongoing for the foreseeable future.

It hardly feels fair to continue to ask my community for help. Unfortunately, any financial support or ideas of how to afford treatments not covered by insurance, in home care or long-term rehabilitation, would be greatly appreciated. As you can see my financial goal has greatly increased to reflect recent events. I am taking things one small step at a time, one day at a time, and any small donation helps.

Blessings and love to all of you. As my hands continue to regain their function I will keep all who wish to know better posted on my progress.

Much love,

Summer Fitzpatrick-Keith
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Hello everyone,

This update may seem redundant to many of you who who have so consistently donated to me and followed my story throughout the past years.

Today, I’m writing in hopes of gathering enough support through the generosity of my fellow human beings to help sponsor my Resistance Flexibility sessions with Bob Cooley and his trainers in Boston for an intensive live in series beginning 7/29-8-7.
I began working with Bob this past winter and have experienced results that give me hope that my life isn’t over and destined to the downward spiral I once thought was.
My moderate to-severe muscular tremors, have consistently been reduced and even completely stop in some parts of my body for a period of time after my sessions. I’ve also noticed increased functioning physiologically and neurologically in addition to Increased ability to speak. In short, every session brings me closer to getting my life back.
My insurance unfortunately does not cover Resistance Flexibility sessions and therefore everything is an out-of-pocket cost for me. This can be quite expensive as at least 3 trainers are required to work on me as my body can spasm quite violently when making a movement and I need the stability of many qualified trainers in order to get worked on. Right now I can only afford to see Bob and his trainers in Boston once or twice a month, which is much better than nothing, but it is not nearly enough to pull me out of the condition I am currently in. My goal is to raise $25,000 so that I can afford 40+ sessions and get the consistent and intensive help that I need.
If you’d like to help and be apart of my recovery, please feel free to donate and/or share my crowdfunding page at www.gofundme.com/5eru5kw. Even the smallest donation is a huge help to me.
Thank you and wishing you all the best,

P. S. For those wishing for a quick blurb about lance Adams syndrome, here is a recent and short one from a respected journal. https://n.neurology.org/epearls/20190131
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Hello friends, family and supporters all. I have spent the past couple of months with the help of your donations working intensively with Bob Cooley and his students when I can, which through has led to multiple intensive sessions a month.
To expedite and continue to maintain and foster positive results, Bob has recommended that I travel to Boston once a week for at least one session if not more, and is impressed with my progress. Previously I was barely able to complete so much as a passive movement without intense tremors and immense weakness. I am now at the point where it takes two of His students to remove the tissue dense fascia and scar tissue from my body against my resistance: awesome progress!
Things are progressing similarly well with my Lyme practitioner. She remains cautiously optimistic that I will be free of all major pathogens by the end of the summer if I keep up the current bimonthly rate of treatment with an occasional need for back to back weeks.
Obviously this continues to be a lot of money, time, and strain on my family and myself. Working with two of Bobs practitioners works out to about $400 a day (I generally try and go to Boston for at least two days) when I am able to get there. And my Lyme practitioner costs $135 per visit as previously mentioned. Any and all help as far as cheap lodging in the Boston area would be greatly appreciated as well.

Although I still cannot stand on my own or walk. I truly feel as though, if I am able to stay this course long enough, I will be successful. I have received nothing but positive feed back from my practitioners and look forward to developing the chance for more.

One more piece of good news, I have no more blood clots in my lungs and am at a severely reduced chance of having any recurring clotting events after my most recent tests a couple of months ago.

My deepest gratitude and thanks to you all as I continue my journey.

I’m optimistic that treatment for Lyme may lessen this summer, however my physical therapy and associated transportation seems like it must continue full steam ahead for as long as possible in order for recovery. As such my current goal is

800 for pt in. Boston + 300 for lodging+
135 every other week for Lyme treatment.

I’m writing this update with hope to last for the next two months.
Much love,

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Hello everyone,

I have some great news to share! Over the past few weeks, I have finally been able to connect with two talented health practitioners for Myoclonus and Lyme treatment.

This week, I had my first appointment with Bob Cooley, an incredibly skilled and internationally-renowned specialist in the field of biomechanics. I have been trying to get an appointment with Bob for nearly two years. Although initially shocked by my physical condition, Bob is confident that I can make a complete recovery (!) with the right treatment plan – possibly eliminating the need for deep brain stimulation (DBS) surgery.

The first session with Bob was enormously beneficial: I continue to experience increased range of motion and improved blood flow, and I’m finding it easier to breathe and stand (with assistance) for short periods as well.

After my session with Bob, I was blessed to be able to work with his student, Chris, for four days. Bob is recommending two further weeks of treatment with Chris, with two sessions each day. Chris, fortunately, is able to both travel to my home and charge a lower rate for his sessions. These sessions will both provide immediate results and help Bob gather critical information he needs to help heal my body.

The few sessions I’ve had with Bob and Chris have helped me more than any other physical therapy or treatment I’ve tried since beginning the road to recovery. Unlike many other treatments, their unique modality can offer permanent results, even session-by-session.

One final piece of good news: In addition to Bob and Chris, I have found a Lyme practitioner who I feel is rapidly making positive changes for my body. My quality of sleep has improved and I’m experiencing less muscle tension, brain fog, and anxiety after only two treatments.

This is where I need to ask for your help. I am anticipating costs in three areas: biomechanical treatment sessions with Bob and Chris, visits to my Lyme practitioner, and medications/supplements to support both treatments.

Each session with Chris costs $175, for a total of $5000 over the entire treatment program. In addition, my Lyme practitioner is recommending 7-10 treatment sessions. These are $135, for a total of $1,350. . Finally, my medications & supplements cost around $135 each month. All together, I am hoping to raise $6,500.

I am so very grateful for all of your continued support throughout this painful and arduous journey.

Love and thanks,

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Raised by 183 people in 16 months
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