Help Sara Beat Severe Cervical Spine Condition

Co-organized

Tor Skeen and Sara Morris-Marano are organizing this fundraiser.

Donation protected

Hello friends, family, and strangers, I am reaching out to you to help my wonderful life partner Sara with some new medical financial burdens we are facing.

To those who know Sara, you know that she is a delightful, kind, loving, and empathetic person that has the ability to brighten anyone's day. While on the outside Sara is the happy, loving person you are used to, behind the scenes she has been battling life-altering symptoms for her whole life. Recently, we found the true underlying cause – Sara was diagnosed with severe cranial cervical instability (CCI), a medical condition where the ligaments that hold your head onto your neck become loose and weakened. After decades of misdiagnoses, confused practitioners, and a lifetime of pain and symptoms which are becoming increasingly life threatening, the diagnosis is a bit of a relief.

Due to a congenital spine malformation in the joints that connect her upper cervical spine and skull, a soft tissue disorder, and a lifetime of Lyme disease causing substantial inflammation, Sara is faced with two options: 1) a major surgery called an occipitocervical fusion, in which bones in the spine and the skull are joined together with rods, screws, and plates, or 2) a technically demanding procedure called Percutaneous Implantation of the Cervical Ligaments (PICL) that would inject stem cells from a sample of Sara’s own bone marrow into damaged ligaments to help regrow them, ultimately rebuilding the structure of her neck regeneratively and without invasive surgery.

If you know Sara, you know that an occipitocervical fusion would radically change her life — she may never be able to turn her head left or right again, let alone maintain her adventurous outdoor lifestyle. Recovery time can take years and fusions can be dangerous and carry significant risks and complications. This type of fusion also cannot be reversed and would likely require additional surgeries to fuse other vertebrae in the future due to new instability caused by the original fusion.

Only one site in the world is authorized to perform the PICL procedure — the Centeno-Schultz Clinic in Broomfield, Colorado, a mere 45 minutes from Sara’s home in Nederland. Despite the procedure’s effectiveness and success in helping patients avoid invasive and life altering surgeries, PICL is not approved by the FDA — and therefore not covered by insurance — and will take years to even reach clinical trials.

Sara needs your help on her path towards healing what has already become a decades-long journey of daily pain and profound symptoms related to core functions of her body. She hopes to be able to continue her work in equity and accessibility in outdoor spaces, backpacking in wild places, and going on adventures with her trail cat, Bean, but right now her head cannot even support the weight of her hair in a ponytail.

Some symptoms Sara experiences:

When she drives, Sara is forced to turn her whole upper body to check blind spots and even make a simple turn because moving her head to look left or right reliably leads to sudden changes in her heart rate, breathing, and blood pressure due to brain stem irritation.
While taking notes at work or journaling at home, Sara’s handwriting ends up changing unexpectedly when she experiences altered control of her extremities from bones in her spine putting pressure on her upper spinal cord.
The unavoidable bumpy dirt roads Sara drives to get to her office and back home each day often trigger day-long nausea episodes as her skull slips backwards on her cervical vertebrae and presses on her brain stem.
Food often gets stuck in Sara’s throat as the unstable upper cervical vertebrae shift and put pressure on vital passageways.
Aside from the physical components of her condition, the mental anguish that Sara experiences from physical pressure on her vagus nerve and from being able to do less and less every day is overwhelming and has a profoundly negative impact on her mental health.

These are just a few of Sara’s daily experiences, and you can read more about the symptoms of CCI here.

How the funds raised will be used:

$50,000 will be used for four Percutaneous Implantation of Cervical Ligaments (PICL) treatments at $12,500 each.
Each treatment includes a bone marrow aspiration, anesthesia, and a very specialized doctor’s expertise and time during the procedure.
No payment plans are available — $2,500 is due at the time of making each appointment and the remaining $10,000 is paid at the time of each procedure.

Thank you for your consideration in supporting Sara. She loves to talk about community — let’s work together and help get her some treatment! If you’re unable to contribute, please consider sharing and help spread the word. Thank you! And as Sara would say, you are all gems!

Read more about percutaneous implantation of the CCJ ligaments (PICL) here.

Read more about PICL success stories here.

Read more about occipito-cervical fusion surgery here.