Queer Trans Disabled Life-Sustaining Surgery

My name is Andrew Jantzen and I’m reaching out for help with a life-changing surgery that I NEED to get within a year.

I’ve been diagnosed with Tethered cord by a neurosurgeon in the US and told I need a $65,000 surgery within a year.

If done within that time frame, it could allow me to walk again without a wheelchair, pee without a catheter, and have my bowels work properly for the first time in years.

If I don’t have the surgery soon enough, these symptoms will become permanent and continue to get worse.

I am a 35-year-old, queer, trans, Mennonite, low-income disabled person. I have Ehlers-Danlos syndrome, use a power wheelchair, and have a feeding tube. I have been involved in community in Nova Scotia for 17 years. From XPride at StFX to the Social Justice Youth Camp at the Tatamagouche Centre, from running youth programs in Halifax to volunteering to develop accessibility standards for the province. I now do most of my work and volunteering from home, due to disability and health issues. I have worked for the Tetra Society of North America since 2019, a National charity that collaborates with people with disabilities to build custom assistive devices for people when nothing else exists. I also recently started working part-time for the Nova Scotia Accessibility Directorate where I build capacity to do accessibility work across the province. Despite having two jobs, my income is limited. This is because the Disability Support Program, which I rely on to pay for my support workers and medical needs, claws back nearly 75% of people's income and caps out well below the poverty line.

Where the other condition I live with, Ehlers-Danlos syndrome, has no cure, tethered cord can be treated with surgery. I will still have medical issues, but imagine what I would be capable of if this serious condition was treated!

The healthcare system here in Nova Scotia will only cover the cost of out-of-country surgery if I get a diagnosis and referral from a NS neurosurgeon.

Unfortunately, the neurosurgeon I saw in NS, Dr. McNeely, does not support the expert diagnosis of Dr. Klinge, who diagnosed me in the US. Dr McNeely doesn't see anything on my MRI and therefore has concluded that it is simply mechanical back pain. Dr. Klinge is an expert in reading MRIs for people with Tethered cord and EDS, where the signs of tethered cord can be more subtle. She has unequivocally diagnosed me with Tethered cord and has recommended surgery within a year.

Sadly, this experience of being dismissed is the same as the others I know with Tethered cord in Nova Scotia. These other people went on to have surgery with Dr. Klinge, who confirmed during surgery that they did have tethered cord.

Our healthcare system has failed me drastically already. The MRI that the specialist in the US used to diagnose me in March 2023 was from 2017, before I even needed a wheelchair. No one in NS, out of all the specialists I’ve seen, identified the issue back when it could have prevented so much pain, damage, and costs. Everyone said nothing was there. They are still saying there is nothing there.

The only way it seems I will receive this life-altering treatment is if I can raise the funds. That’s why I’m asking for your help today.

I’m hoping to raise $65,000 for my surgery and the rest for recovery costs and travel to and from the US. This will allow me to get the treatment I need and start living my life more independently inside and outside again.

In addition to surgery, I would need to stay in Providence, Rhode Island for 3 weeks to heal and have follow-up before traveling back to Nova Scotia. As a person who uses a feeding tube, has limited hand function, and uses a power wheelchair, I need personal support workers to accompany me.

If anyone is interested in accompanying me (you would be paid), please contact me!

Cost estimates:

Accessible hotel: $4,500

Food for support: $69/day = $1,449

Tube feeds plus Andrew’s food: $1,500

Accessible transportation: $500

Flights: $1,000 × 2 = $2,000

Cost of support worker: approximately $5,500* (there is a possibility this could be covered by a program so it has not been included in the total)

Additional Medical buffer: $5000

Total: $79,949

Thank you so much for reading and for your support and generosity.