Help Me Heal: Urgent Surgery for Tethered Cord Syndrome

Jordan Smith is organizing this fundraiser on behalf of Karlyn Hiebert.

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My name is Jordan, but I’m not who this story is about. My best friend and soul sister of 29 years has tirelessly battled what appeared to be an invisible illness their whole life. Over the past 15 years I have had to watch my cheerful, passionate, driven, take on the world bestie slowly lose more and more mobility. No one could tell us why and it was heartbreaking to see. At the end of March, we finally got some answers in the form of a diagnosis of tethered cord syndrome requiring spinal surgery. While I wish I could perform the surgery myself and give Karlyn the full recovery we are hoping for, I cannot so I'm hoping I can help in easing the financial strain.

The costs associated with the surgery and intensive aftercare, and the possibility that there may be a need for further surgeries is terrifying. If you would like to help, you can donate and we are so grateful for anything you can give. You can also make a difference just by reading and sharing Karlyn's story below, and helping to raise awareness for individuals facing and living with TCS. Thank you so much for your time.

From Karlyn <3

Hi! I’m 35 (36 at the end of April!) and battling a rare spinal cord disease called Tethered Cord Syndrome. After struggling for most of my life desperately trying to figure out what was wrong with me, I was formally diagnosed at the end of March 2025. Due to the nature of my case, fast progression of symptoms, and the severe risk of permanent damage (including paralysis), my tethered cord release surgery has been scheduled on an urgent basis for Tuesday, May 6, 2025. I am incredibly fortunate that I was diagnosed when I was.

My story starts when I suffered a traumatic birth which caused considerable damage to my spine and pelvis. Unfortunately, this was not diagnosed or treated at the time and my parents were sent home with me without realizing the extent of the damage. Throughout my childhood I was constantly having health problems, chronic pain, and fatigue with no answers as to the cause. I experienced a serious horseback riding accident in 2011 and thereafter received a diagnosis for Ehlers-Danlos - Hypermobile type (hEDS). From there, a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) followed. I tried to adapt to my new normal and make the most of it and was blessed to receive my service dog Beau, who has taken incredible care of me and been my steady companion ever since.

Living with undiagnosed Tethered Cord Syndrome has impacted every aspect of my life. My symptoms worsened at university for Equine Management, and I was forced to abandon my dream of managing a stable and getting my horseback riding instructor certification. I’ve never lost my love of horses, and they have been some of the brightest points in what has been a 35-year battle of trying to prove that my health problems were real, and I wasn’t “faking” it.

I have tried to fight through the pain and tell myself that there must not be anything wrong with me because I had been told this so many times by so many doctors. My body had other ideas and has continued to deteriorate over the years, despite every effort to stay active and healthy, and at times I have been wheelchair bound with extreme fatigue, migraines, muscle weakness, and nerve pain. This has severely hindered my ability to participate in the work force.

I have always been fascinated by butterflies (and all insects), and I found my niche, and a community, in the butterfly breeding world over the past several years until even that became physically out of reach due to my worsening condition.

Last year, I was involved in what was seemingly a minor car accident. I now know it triggered an immediate and steep decline in my mobility and symptoms, until I was no longer able to walk unassisted. I began physiotherapy to look for a cause and hopefully get back some semblance of my life. It was through my physiotherapist that they suggested that I might have what we now know to be Tethered Cord Syndrome. After some investigation, I was shocked by how aligned my symptoms were. It is known to cause pain, muscle weakness, sensory changes, bladder symptoms, unpredictable nerve symptoms like spasms or electric shocks, and in severe cases complete paralysis.

From there I found Dr. Petra Klinge who specializes in tethered cord release surgery, particularly for individuals who also have EDS. After a review of my current and historical MRIs, she was able to diagnose me from visible evidence in the imaging, along with the clinical criteria very recently established in her published study last year. Due to the severity of my condition and risks of reaching irreversible damage, I was booked into one of her earliest surgery slots in Rhode Island.

The surgery itself is $100,000.00+, not including the travel to and month-long hotel stay in Rhode Island for post-surgery recovery, pre and post-operative testing, and the multi-year rehab I have ahead of me. This surgery is not a cure, but will at minimum, stop the decline of symptoms. There is always a possibility I will require more surgeries and more extensive treatment or rehab. We are hopeful that a large portion of the surgery will be covered by insurance, but they will not cover anything else which leaves a significant shortfall.

My parents have always had some savings put aside and are able to partially help, but this diagnosis and surgery came fast, with no time to financially prepare.

So here I am, appealing for your help. If we can find enough people who are willing to donate the cost of what they’d spend on a beer or coffee, the surgery and rehab could be covered in full. Any and every donation can make a real difference. Even if you can’t afford to spare anything, you can make a big difference just by sharing this page. The diagnosis and outlook after surgery has for the first time provided validation that it wasn’t all just in my head and given me so much hope for the future.

I have always held onto my dream that I would return to horseback riding and obtain my coaching certification, and I would love to continue with my butterfly farm and future insectarium. My butterfly community brought me along (in spirit via cardboard cutout) on a hike to Machu Picchu and I would love to be able to be there in person one day.