Help Walker find secure housing post surgery

We all worked together to make this webpage that explains why his care requires so much money.  It is very relevant to the current fundraiser, so we hope people can read it.


(Walker playing music live with his friend and father before becoming ill)



Walker Storz has been struggling with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), since 2017. There are no standard treatments or protocols for ME/CFS, so people with this diagnosis are left to largely figure out their own treatment and pathways through an inadequate and unsympathetic health care system. While Walker has become severely ill we have still been able to make great steps forward to understanding ME/CFS and Walkers condition specifically. One of the most promising developments in Walkers health has come from moving to the Western US from the more humid East coast. Here we have been able to find good locations and environments free of mold and other toxins that are common on the East coast that extremely degrade Walkers health. It may sound like a very simple solution however during these travels walker has gone from bed/wheelchair bound and at times unable to speak or move to being able to walk short distances, solely from changing environments. This has been an amazing revelation in Walker’s recovery, however he has many compounding medical issues stemming from ME/CFS, including Craniocervical instability (CCI). CCI is a pathological condition of increased mobility at the craniocervical junction, the area where the skull meets the spine. With CCI the ligaments which support your skull are weakened causing your skull to drop onto your spinal cord, and causing very dangerous symptoms. The intensity of Walker’s CCI has been rapidly increasing and it is clear that he will need surgery. He currently has a surgery date for early fall for a spinal fusion. Right now we are trying to plan for the best recovery after surgery. The success of the surgery greatly relies on the healing process in the first weeks and months. Our plan will rely on an outfitted travel trailer so that Walker can continue to heal in pristine environments that don’t deteriorate his health. We are looking to buy a small trailer for Walker to live and sleep in which usually runs around 10,000$+. A mobile/semi mobile living situation is very important as some of the places he has been healing the most are at risk for wildfires. This will make it easier for him to live in environments that are good for his health without worry of exposure to wildfire smoke and fire retardants which are both very harmful to his sensitive immune and respiratory system. Walker is also at extreme risk for COVID so having a safe living situation is essential to avoid short term rentals/hotels where he may come in contact with more people. We are really hopeful that with this surgery and a successful healing process Walker can begin his next chapter and begin to take substantial steps forward to a full recovery. Walker has been very involved in researching on his own and in ME/CFS activism despite still being severely ill. For those who know Walker you will remember that he is a passionate and skilled musician and a caring son, brother and friend. We are extremely grateful for the many donations received so far and for all the thoughts, prayers and well wishes. We are hopeful to see Walker on his way back to his healthy self and able to play music again soon!

Timeline:  Walker's currently scheduled ICT date (the test --invasive cervical traction--that determines whether he can have surgery) is at the beginning of October.  He may have to stay in the NYC area--between total time in hospital and time recuperating before travel back West--a total of a month or more, so we are factoring that in to possible hotel costs.  After that, we would like to move him into a travel trailer as soon as possible, so we basically want to order the trailer now and have it ready not too long after surgery.   This is a really tight deadline.  We need to raise this money quickly.

But as its custom ordered,  and the timing isn't guaranteed we may want some backup options, like to try and find a mold free rental, which is difficult, or have a canvas tent with a heater that walker can spend a lot of his time recuperating in--which would cost around 1000 dollars.  It's even possible that if we can't find a rental quickly enough and the trailer isn't finished quickly enough, Walker may have to spend some time in hotels or airbnbs, which would add to the costs.  It's also possible that if they can't get the trailer done soon enough we may have to go with a more costly custom trailer company.   We need backup plans and the finances to deal with those.  This time last year Walker really wanted to have surgery but could not find housing to recover in, nor a local pcp and pain doctor who could help.  We are trying to avoid a repeat of another year of waste and pain in Walker's life.


For a more detailed timeline of Walker's illness, a more detailed breakdown of expenses continue reading below! 

Also please check out Walker's website for more info on his story as well as ME/CFS activism:
https://walkerstorz.com/

If you have any questions or want to find ways to help besides financially, please feel free to contact [email redacted] 

This gofundme was set up by Sofia Burnham, a close friend of Walker, Sammy and the Storz family. All funds will go directly to Walker and Sammy Storz.

Walker and Sammy tbt

WALKER'S ILLNESS OVERVIEW:
Walker was diagnosed with Lyme Disease and was treated for that condition in 2016. He continued to work and go to college for the year following that, but in 2017 he became severely ill again, and he received the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a debilitating condition which manifests itself in a variety of ways. For Walker it has meant regular and intense pain, severe fatigue, and being generally immobile and physically confined to his bed or wheelchair, among myriad other problems.. He has been continuously ill since 2017, and his condition has generally declined, though his recent journey has brought some glimmers of improvement. ME/CFS often follows a preceding infection or condition, such as Lyme Disease. In June 2019 Walker was diagnosed with CCI and shortly thereafter it was determined he would likely need surgery. Walker is currently in the Western US, moving around in an attempt to find locations that provide some relief from his symptoms, with the hope that this may ultimately prove to be healing for him. He has had success with this approach, however now with worsening CCI symptoms his health is deteriorating again. Walker will need surgery before he is able to continue healing successfully through other ways. 


EXPENSES:
Being ill is costly! 

Walker has not worked since he has become ill, and he requires constant care and support. He does receive a small amount of disability income, we are grateful for this, but it's a drop in the bucket. Sammy has been working as Walker's full time, sole caregiver for more than a year now, and thus she is unable to work. Thea and Bill have each taken FMLA paid and unpaid leave to contribute to care. Walker’s needs include basics such as shelter and food, as well as medications, supplements and other treatments that are not covered by health insurance. Please consider a contribution to help Walker on his road to healing. 


Compounded medications, housing, travel, gas, copays, doctors that don’t take insurance, supplements, OTC medications, food, housing, etc, are all expenses that impact our family. Because Walker’s symptoms are so terrible, and as there's really no clear medical protocol for his disease, we try a variety of approaches. Some are covered by insurance, some are not. One of our biggest expenses is compounded prescriptions. We are currently working to get these covered by insurance, but it’s an uphill battle. Out of pocket costs for meds alone are about $400- 800/ month.

Walker doing well out west! :)