Donate to Tessa's Critical Medical Treatments
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Dear friends, family, and kind-hearted strangers,
I’m reaching out with a heavy, but hopeful heart that, with your help, we can make a significant difference in Tessa's life. As some of you may know, Tessa is struggling with multiple chronic health conditions that cause debilitating pain and neurological issues every day, leaving her unable to work or live a normal life. We are unable to afford or finance any more critical treatments she needs to manage her pain and prevent further damage, which is why we are asking for your help.
Tessa has been diagnosed with a combination of Ehlers-Danlos Syndrome (EDS), cranio-cervical instability, chronic Lyme disease with co-infections, and Mast-Cell Activation Syndrome triggered by black mold exposure (just to name the biggest contributors!). These illnesses have severely affected the stability of almost all of her joints due to ligament laxity and collagen damage; her cervical spine ligaments the most. This is causing spinal degeneration leading to chronic pain, neurological degradation from artery compression and nerve root encroachment, and trace spinal cord flattening.
(MRI - Mar 2023)
The Struggle:
Tl;dr: Tessa is dealing with massive amounts of cervical spine instability that calls for a specialized treatment aimed at repairing and strengthening the damaged ligaments, namely the alar ligaments. Failure to address the specific laxity issues now will result in further degradation and disability leading up to spinal fusion surgery as the only alternative, which we want to avoid at all costs due to the risks and contraindications with her EDS. All of the interwoven pieces are causing an incredibly reduced quality of life, and is greatly impacting her ability to function, build a future, and be the partner and parent she strives to be. Tessa's disability has severely impacted her ability to work, care for herself, and participate in life outside of any “good days” that we are lucky to have. Despite these challenges, Tessa remains incredibly resilient and committed to seeking treatments that can provide some relief.
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For over a decade now, Tessa has experienced intense migraines, muscle spasms, joint pain, and other neurological symptoms that were never really connected to anything. After Jonah was born, her symptoms began to drastically decline and it became harder and harder to function normally. At the beginning of 2023, through genetic testing, she was diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder that affects the body’s collagen structure. It can cause lax ligaments and joint instability leading to a variety of issues like muscle imbalances, joint injuries, and chronic pain. This led to Cranio-Cervical Instability - her neck ligaments are too loose, allowing the vertebrae to move too much leading to migraines, pinched nerves, nervous system problems, muscle degeneration, and disc degeneration. EDS makes it harder for wounds to heal, for your body to maintain orthostatic tolerance, and since collagen is everywhere in your body, so are the effects of EDS.
More on EDS here: https://www.ehlers-danlos.com/what-is-eds/
More on CCI here: https://centenoschultz.com/craniocervical-instability-cci/
(Atlas vertebra (C1) 10mm tilt - Sep 2023)
In 2023 she had two rounds of Platelet-Rich-Plasma (PRP) injections into the posterior neck ligaments to help stabilize them. It helped a lot, however right before her second round of injections, we unknowingly moved into a rental that had a black mold issue. This triggered a Mast Cell Activation disorder, and began degrading the collagen and ligaments in her neck already damaged from EDS, stealing away progress made by the PRP. We found out about the mold problem in June 2024 and moved out as soon as we could. She has since gone through treatment for the mold exposure and is prescribed mast-cell stabilizers which have helped tamp down the inflammation.
In February of 2024, she was diagnosed with chronic Lyme disease and a handful of co-infections. She is undergoing long-term, rigorous treatment that has ups and downs, with the goal of putting the Lyme into remission. The assumption is that it was acquired at some point in childhood and in remission until the immune suppression experienced during pregnancy allowed it to become active again. You can read more about Lyme disease here: https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme-disease/
All of this unfortunately has played together leading to a decreased quality of life, chronic pain, fatigue, joint issues, neurological problems, etc. She is rigorously doing physical therapy, medications, and any other supplemental means to help ease discomfort and strengthen her body. We have had to pay for mold testing in all our apartments, special products to make sure we keep mold spore levels low, air purifiers, a dehumidifier, braces and supports for joints, special pillows, special prism glasses, dietary restrictions, and constant medical appointments, testing, and procedures. Over the last 3 years, we have incurred a debt of over $40,000 just on medical costs alone. We are living paycheck to paycheck, buried under this massive debt. We have no more financial options at our disposal.
We have 1 year of Lyme treatment under our belt, and probably several more to go. Her MCAS is somewhat controlled through medication and dietary changes, and she has gained some stability back through physical therapy. However, Lyme disease is awful, and the destruction it causes can ebb and flow. She has recently experienced a significant step backwards with neck disability due to compounded stress on the neck joints from the instability over time, combined with the chronic inflammation from Lyme.
Recently, the C3-5 vertebrae slip forwards any time she looks or bends forwards. (Shown in the picture below). It can be moved with finger push, and she can feel the vertebrae pressing into her throat every time she swallows. The other unstable vertebrae are pushing on nerves and her spinal column, causing many neurological problems like hypersensitive nerves to the point that clothes are painful to wear, memory loss, vertigo, diagnosed narcolepsy, near fainting, weakened blood vessels and veins, and circulation problems to name a few of the recently onset symptoms. The narcolepsy is hard to manage even with medication, and her provider now encourages her to not drive whenever possible since having an attack while driving is incredibly dangerous.
(MRI report - Mar 2023)
(Digital Motion X-ray (DMX) - Mar 2025. The mm listed are how far they slide forward when looking down. The normal number is 0mm.)
The Treatment:
Because of the urgent need for spine stabilization, Tessa was recommended getting a treatment called PICL (Percutaneous Implantation of the CCJ Ligaments), a highly specialized procedure that targets the anterior cervical spine ligaments and has a high success rate for people with EDS/instability that don't respond as well to posterior injections or conservative therapies. This would be much more beneficial long term, however the cost is $12,500 per treatment and two to three treatments are usually needed for complete success. Pre-treatment also recommends 10 hyperbaric oxygen chamber sessions to increase stem cell count. This pretreatment is also a recommended therapy for Lyme disease as well! So it will benefit many facets of Tessa’s health. People often sell their houses, use retirement, or savings to pay for this lifesaving procedure but we don’t have any of that to draw from.
(DMX - Mar 2025. Normal is 0mm overhang. The below picture shows the overhangs when leaning to the side listed on the last bullet point of the report.)
(Neutral)
(Leaning Right)
(Leaning Left)
(Parts compromised from upper cervical instability. Putting it all together, when Tessa tilts to the right, there is a 4.5mm overhang pushing on the vagus nerve, jugular vein, and carotid artery. 4.0mm on the left side.)
Tessa also requires Platelet-Rich Plasma (PRP) injections into her posterior cervical spine and sacroiliac (SI) joints, and occipital nerve blocks once again as recommended by her providers. PRP injections have helped in the past with two previous treatments in April 2023 and November 2023, offering promising relief and increased ligament stability. Comparative X-Rays after the first treatment showed increased curvature in her neck and increased joint stability, proving that this treatment is making a structural difference in her body by tightening the posterior ligaments. This, combined with the PICL should help with all of the injured ligaments simultaneously.
Additionally, Tessa has been recommended Stellate Ganglion Blocks, which target the cervical spine and are aimed at reducing pain caused by nerve irritation and nervous system dysregulation. This is usually a series of 3 treatments. This could be a game changer in managing the pain associated with her illness.
https://pubmed.ncbi.nlm.nih.gov/37786891/#:~:text=Abstract,stellate%20ganglion;%20stellate%20ganglion%20block.
Unfortunately, the cost of these treatments is substantial, and without monetary assistance, they are not affordable or financeable in any way. We are already living beyond our means to provide Tessa with as much Lyme treatment and support as possible to prevent further pain or damage, but we are unable to continue affording or financing the multitude of treatments.
Without intervention now, the instability will only worsen, leading to the potential for invasive and high risk procedures like spinal fusion surgery, which is not a recommended option for someone with Ehlers-Danlos Syndrome due to the fragility of their connective tissue. "Fusion of the spine significantly alters the biomechanics of the spine. The fused segment is no longer able to absorb the forces of daily living. As such these forces are then transferred above and below the fusion. This additional force can overload the discs, facet joints, muscle, and ligaments above and below the fusion which start to break down."
We are also looking into hyperthermia therapy and SOT injections to hopefully put the Lyme into full remission. These treatments come at a significant cost as well - any donations beyond the goal will be put into savings for this procedure.
Why We Need Your Help:
Due to the nature of Tessa's conditions and the inability to work, we have accumulated significant medical debt. Her treatments and testing over the past two years have accumulated substantial credit card and personal debt, preventing the ability to qualify for any payment assistance or medical loans. Living with chronic illnesses has resulted in a much higher cost of living, while also being forced into a single income. Medications, supplements, support supplies, testing, medical appointments, physical therapy and more regularly add to this cost. This has left us with no more financial means to pursue these necessary treatments.
Treatment Costs Breakdown:
PICL Procedure (3 treatments, 6-12 months apart each)
- $12,500 per treatment plus repeat travel expenses to CO: $40,000
- Pre-treatment of 10 hyperbaric oxygen sessions: ~$1,000
- Broomfield, CO - Dr. Centeno - https://centenoschultz.com/treatment/picl-procedure/
Cervical Neck, SI joint, and Bilateral Occipital Nerve Blocks: $5,000
Stellate Ganglion Blocks (3 treatments): $3,000 ($1,000 per treatment)
Performed by Dr. Ontono Silva in Bellevue, WA. Dr. Silva has performed both of Tessa’s previous neck treatments as well as one of her SI joints.
Total for Necessary Treatments: $49,000
As we look towards even more treatments in the future, any additional donations beyond our initial goal will be put into savings for the following:
Hyperthermia treatment for Lyme: $20,000
SOT Therapy for Lyme: $1,500-$5000 per treatment, can be done up to 3 times per year.
After these treatments, there will still be lifelong management of both the Lyme and EDS that will require more costs down the road. Any additional donations will go into a separate savings account to be used solely on future medical costs.
How You Can Help:
We are humbly asking for your help in covering the cost of these critical treatments. Any donation, no matter how big or small, will go a long way toward helping Tessa regain her health and improve her quality of life. If you are unable to donate, please consider sharing this campaign with your network—your support in spreading the word will be invaluable.
A Message from Tessa:
“I want to thank each and every one of you for taking the time to read just a little bit of my story. I never expected my life to look the way it does now, but anyone who knows me knows that I am stubborn and determined. The fact that treatments exist today that can help resolve chronic illnesses and the conditions that I have give me hope for me and our family’s future, while the blatant lack of accessibility due to finances makes the pain that much harder to bear. Lyme is brutal - it has stolen pretty much everything from me. I feel like I often am just crawling forward to survive, instead of being able to actually live. I want Chris to have the partner he remembers, and for our son Jonah to look back on a mom that was present, playful, and most of all loving. Seeing how much this illness takes from them as well breaks my heart. Most of me continues to exist for the love of my family, and the other part of me exists out of spite. Either way, I’m still here and I’m not letting this take anything else from me without a fight. It’s frustrating that the quality of my entire life can be determined by our bank account. In the past, it’s been hard due to the pain. This is the first time I’m actually scared by the symptoms that I’m having and what may happen without taking action.
Being the nerd that I am, here is more information on these conditions for those who are curious or who may be experiencing something similar.
https://projectlyme.org/hyperbaric-oxygen-therapy-hbot-for-lyme-disease-interview-w-dr-alexander-alvarez/
You can find more info on the PICL procedure from Dr. Centeno here:
Thank you for any and all donations towards these treatments, they mean more than I can express. “
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Thank you, from the bottom of our hearts.
With your help, Tessa can take a crucial step toward healing and a better quality of life. Let’s show her that she doesn’t have to fight this battle alone.
Please consider contributing to Tessa's journey to recovery today.
Thank you for your support, compassion, and generosity.
Organizer
Christopher Snow
Organizer
Vancouver, WA