Help Walker Storz beat ME CFS

***This fundraiser has been paused, please read the most recent update to learn more. Walker also has a new fundraiser here: https://www.gofundme.com/f/support-walkers-recovery-from-severe-mecfs***

https://walkerstorz.com/

Walker Storz is severely ill with myalgic encephalomyelitis (ME/CFS) as well as Craniocervical instability (CCI) and Mast cell activation syndrome (MCAS). As Walker continues to navigate complex chronic illness, he needs your financial support for housing, medication and treatment, and expenses relating to his upcoming surgery. Here’s more information about each category:

 

Housing: Walker has Mast Cell Activation Syndrome (MCAS, an inflammatory disorder that causes mast cells to release an inappropriate amount of chemicals into your body. This causes allergic reactions and a wide range of other symptoms) making him extremely sensitive to mold and other triggers. Because of this he has not been able to live in his family home since spring of 2019. We have had a difficult time finding long term housing that does not make him sick. Walker and his caretaker(s) have used a combination of camping, and staying in hotels or AirBnB’s for housing since then, and will continue to into the future. While camping saves money, it is not always possible due to colder temperatures, Walker’s declining health and other factors, such as needing to have WiFi for medical appointments. In recent months Walker and his caregivers have had to stay at a hotel close to NYC for appointments with Walker’s neurosurgeon, and will need to stay in hotels again when he gets surgery.

Related to this, Walker recently ordered a WeRoll Trailer to make camping more accessible and comfortable, and so that he can have a mold-free place to sleep in most locations. This is a huge step forward, however Walker and his caregivers still need a vehicle to tow the trailer. Your donations will help them secure a reliable truck or van.

 

Medications and treatments: Insurance does not fully cover many of Walker’s medications, and it does not cover any of the supplements he relies on (these add up!). Walker currently sees multiple different doctors, some of whom are out of network specialists, we are very grateful he has a great team of specialists however it is another huge cost. Additionally, there are many other treatments that are either not covered by insurance, or are only partially covered. These treatments could help him immensely, both before and after surgery but are currently out of reach due to costs. One example is Intravenous immune globulin (IVIG) this treatment helps with the immune system, this would likely be a great treatment for Walker and has been suggested by one of his doctors however it can cost anywhere from $5000-$10,000 so it is currently not an option. Another big cost can be testing and imaging that is very important to figuring out Walkers care but is often not fully covered by insurance.

 

After-Surgery Care: Walker has been diagnosed with  Cranio-Cervical Instability (CCI, a medical condition where there is excessive movement of the cervical vertebrae leading to instability.) This is a common comorbidity for people with ME/CFS and may have been worsened due to the chronic inflammation caused by MCAS which can damage connective tissue. He has been approved to have the fusion surgery he needs to address this which is a great step forward however it will inevitably incur even more expenses. Walker will need to see a doctor to manage post surgery pain which may be only partially covered by insurance, as well as a Physical Therapist which will not be covered by insurance. He will need additional care from friends and family during his months-long recovery, and your donations will help pay for their living expenses/lost wages and travel, and an additional caregiver if needed.

 

If you have no personal experience it can be hard to understand just how expensive it is living with severe chronic illness. For reference, here are some specific expenses your donations would go towards, these are just some examples, not all of our expenses:

 

Car to tow WeRoll trailer: 5000-10,000 (conservative estimate)

 

Hotel: 550/week 

(This is what we will need short term during neurosurgery appointments and procedures. Our long term housing will be much cheaper.)

 

One out of network specialist: $800 for 60 min appointment $440 for 30 mins

 

Palliative medications: now around $200/month with partial coverage, previously around $400/month

 

Various supplements and over the counter meds: $150/month 

 

As you can see this all ads up very quickly, this is not including basics like food, gas etc. We also currently do not have any paid caregivers as we can not afford it but it would be very helpful. Currently all care is being done by family and friends, which incurs further loss of income.

 

All of the above expenses are an incredible burden on Walker and his family, and they are endlessly grateful for all the support and donations they have had through this whole struggle. With your support, they are hopeful that Walker will be able to recover well from surgery and regain his strength over time. There’s still a tough road ahead.

 

 

Walker in the hospital for his ICT, an important pre surgery test.

 

 

If you have been following his story for a while there have been some big changes recently for Walker! If not, a short introduction to the situation. Walker has been diagnosed with Myalgic Encephalomyelitis (ME/CFS) since 2017 after getting Lyme disease, his health has been decreasing since his diagnosis and he is now severely ill. There are currently no standard treatments or cures 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. Walker has also been diagnosed with craniocervical instability (CCI) as well as Mast Cell Activation Syndrome (MCAS) and several other concerning comorbidities. Walker and his family have put countless hours into research and work and have found many treatments and ideas that have greatly improved Walker’s health and give us great hope for his recovery. Since his CCI diagnosis Walker has seen multiple neurosurgeons and now is pursuing a cranio-cervical fusion surgery.

 

Walker had his second round of Invasive Cervical Traction (ICT) to affirm his need for surgery  on May 27, 2021. This time he ‘passed’ and he can now have fusion surgery with one of the best surgeons for CCI. Walker will be extremely vulnerable after his surgery, and the first weeks and months will have a huge impact on how successful his recovery is. Walker and his family have a lot to set up in the time leading up to surgery, including housing, new doctors to manage pain, physical therapists, and caretakers. See the fundraising breakdown above for more information.

For those of you who do not know Walker personally, here is a quick introduction to him and why he is raising money. Walker has been ill with ME/CFS  as well as many comorbidities since 2016, after contracting Lyme disease. He is currently severely ill. Walker grew up in Northern Vermont with his parents, and two younger sisters. He is incredibly passionate about music, photography, and writing. He spent much of his time before his illness performing live and recording original music. One of the worst things about his illness is that he has had increased trouble with misophonia (sound sensitivity). Currently Walker can't even listen to  music on most days without extreme discomfort. Walker has not only been constantly working to figure out his own condition but also urging for more funding and research. Walker has a website where you can check out his art, music, and writing. It also includes his work advocating for change, and his theories about the etiology of this illness.There are unfortunately many other people in similar situations because of this horrible illness so even if you can't donate you can make a big difference by calling your representatives and urging them to push for more funding for research and support. A reliable and accessible resource that explains ME/CFS is the film Unrest on Netflix. Please share and check out his website if you are interested in helping!

Walkers website: https://walkerstorz.com/

 

Walker with his sisters.

Walker and his family are very hopeful that with surgery, proper recovery, and some promising new medications and treatments, he will be able to recover. They are eternally grateful for the amazing support they have had through all of this from friends, family and community. Navigating this severe illness is extremely expensive and complicated, there’s still a long road ahead. Thank you all for your ongoing support through this difficult time!