Below is my original GoFundMe story for those who are interested in getting to know me and my journey.
I'm a Speech Pathologist. I work in Early Intervention, and my focus is feeding and swallowing in more medically fragile infants and toddlers. I love my work, my friends and family, and live for adventure, exercise, and being outside.
Since I was little, I have experienced severe bladder and back pain, the cause of which was misdiagnosed and misunderstood by numerous physical therapists and doctors, leading me to believe it was my responsibility to manage. I thought I was fixing my body and healing my pain by developing a delicate balance of cross fit, running, rock climbing, and yoga. But in March 2017, I threw my back out and my condition spiraled out of control.
A few months later I was finally accurately diagnosed with Spina Bifida Occulta and Tethered Spinal Cord Syndrome, which is congenital, progressive, and usually found in childhood. By this point my symptoms had worsened to the point that I was in constant and severe pain, my legs were weak and numb, and my bladder had grown so large it was taking up my entire abdomen. In July 2017, I underwent an urgent and invasive surgery to release the tethered cord. Things seemed to be getting better for awhile, but then they took a bad turn for the worse. Both my surgeon in Reno and the surgeon I saw at Stanford were unable to see anything on my MRIs and both put me off for months. Now I have been tethered for so long that although the specialist in Rhode Island identified my tether and scheduled me for surgery right away when I saw her, it is unclear how much permanent damage has been done.
My 2017 goals were running a marathon, hiking the John Muir Trail, completing my 200 hour yoga teacher training, starting my lactation consultant certification, starting a support group for my families with g-tube dependent babies and kids, and learning to trad climb. Instead of achieving these dreams, I had to stop working and say goodbye to the babies and their families I love working with so much. I have been spending my time in acupuncture, extensive physical therapy, any other treatment I could find that I thought might help, looking for a doctor who could help me, and fighting for insurance coverage.
Now, more than a year after my initial surgery, my medical bills are overwhelming and I am in more pain every day then I ever thought was possible to endure. My nerve pain spreads over my entire body and I am unable to carry more than 5 pounds. My bladder does not work on its own anymore. With the progression of this disease I get increasingly more frequent flare ups which leave me unable to walk on my own or use my arms, hands, and feet in a normal way. I can no longer walk all the way through a store on a good day. I’m not allowed to stretch, bend, or lift anything because of the further damage it can cause to my spinal cord and nerves. I can no longer cook, work, or exercise.
In addition to helping me pay for the expenses outlined above, I hope this page can raise awareness of Spina Bifida, Tethered Cord, and help people understand a little bit more of what these conditions are by providing just one example of the daily fight of a person struggling with them.
With gratitude and love,
DonationsSee top donations
- Michael Croft
- Anja Vogt
- Molli Luke
- Jody & George Kollinzas
Fundraising team: Angies Angels (2)
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