‼️ Combined with the GoFundMe and people's donations to me personally (i.e. venmo, cashapp, paypal), we have reached our goal, and even raised a little bit over!! Any of the extra funds will be saved for the actual surgery costs and trip. I will keep this GoFundMe open, and I will update with more information and a new money goal when I have a better idea of how much things will cost. ‼️
From the bottom of my heart to everyone who has donated or shared my story and fundraiser, I greatly appreciate every one of you, and am overwhelmed with the outpouring of love and support I have received. Thank you so very much!
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Hi, I’m Kiki! I’m 23 years old, a current undergraduate medical studies student, and a chess teacher! I love to write, create art, play my instruments (tenor saxophone and bass guitar), and hike! In May 2025, I started fighting progressive, neurological symptoms that severely affected my mobility. I opened this GoFundMe to ask my family, friends, and generous strangers to assist me in pursuing a life-changing surgery.
Over the last year, I quickly developed a slew of neurological issues, such as foot drop, nerve pain, numbness, partial/temporary paralysis episodes in my legs, muscle tone loss, severe lower back pain, bladder/bowel dysfunction, and more. I began to use a wheelchair full-time to allow me freedom and independence to continue school and work. My doctors and I have pursued many avenues of treatment, most of which I still do to manage my symptoms, such as physical and occupational therapy, the use of AFO braces, pain management, and more. As my symptoms progressively got worse and more severe, my doctors became concerned about permanent nerve damage and paralysis. After many tests, scans, and appointments, my doctors believe that I have a condition called Tethered Cord Syndrome, and suggested surgery.
Tethered Cord Syndrome is a rare and progressive neurological condition of the spine, affecting about 1 in 4,000 people. TCS is caused by the spinal cord becoming tethered to the wall of the spinal canal. It can also be caused by a thickened/scarred/fatty filum terminale. Most cases are congenital, where it is caught at birth or early childhood, but it can also be acquired or detected later in life. More about TCS can be found here [https://tetheredcord.com/what-is-tethered-cord/]. While surgery is not a cure, it is the only way to stop the progression of symptoms and to prevent any further permanent nerve damage or paralysis. Most people who receive this surgery do stabilize or improve their symptoms, and some even regain their mobility, something that would mean a lot to me!
I was referred to Dr. Klinge in Rhode Island, who is one of the few doctors in the United States who performs Tethered Cord surgery on adults. She is also highly specialized and informed about (hypermobile) Ehlers-Danlos Syndrome, a genetic connective tissue disorder I have that can cause surgical complications, so it is very important to see a surgeon who specializes in this area of care. My first appointment with her is a consultation with a comprehensive hands-on neurological exam and requires me to attend in person.
As I attend school, work, and constantly battle my insurance, pharmacy, and hospital bills, the price it will take to fly out of state for treatment, and eventually surgery, is terrifying. However, the prospect of sustaining a spinal cord injury due to untreated Tethered Cord Syndrome is even scarier, though I know this is something I need to do to help me live my best life.
I am asking initially for just the consultation appointment, $1,200 for medical and travel costs. This includes one night, round-trip tickets to Rhode Island for 2 people (me and my wonderfully supportive girlfriend), plus taxi/bus fare to get to and from the hospital and airport. We will be only staying for the appointment, and won’t need lodging costs for this visit! I will update this fundraiser’s price goal when I have more information about the surgery's price, date, and other associated costs.
I would be beyond grateful for any help that gets me closer to my goal. This is the first step in a life-changing surgery that could allow me to hike, swim, and walk again; not only that, but this would also help me pursue my educational dreams as I resume my bachelor’s program this upcoming summer after graduating with my
I sincerely thank you from the bottom of my heart for the support!