Hello, my name is Stephanie! I met my partner, Shan, in 8th grade. We were best friends for 7 years before we started dating in 2015, and we’ve been together ever since! We’ve always loved exploring the world, camping with our dogs, being creative, and volunteering or rescuing animals from our local animal shelter. We’ve moved across the country together twice and are very happy to be settled in Colorado.

Summary:

I am starting this GoFundMe for Shan because they do not have access to safe transportation that meets their complex health needs. As a result, they are suffering much more painful and debilitating health outcomes due to injuries from unsafe transportation and delays in receiving timely medical care, as well as living a very limited and isolated life. Please help them live a fuller, safer, healthier life by supporting our fundraiser for a wheelchair accessible van!

A brief overview of Shan’s health journey:

In 2019, Shan broke their nose. This caused a small cranial cerebrospinal fluid leak, which remained undiagnosed for 4 long and confusing years. This leak caused chronic migraines and weakened the nerve signals their brain was trying to send to the body. Gradually, they began experiencing numbness, fatigue, and losing strength throughout their body. This significantly worsened the stability of their joints, causing significant chronic pain and physical disability. By Spring of 2020, they began using a wheelchair when long dog walks became too tiring. By the end of that summer, they could no longer walk more than a few steps or safely transfer into the passenger seat of a car; they have not had reliable access to safe transportation for those 6 years since. This has been incredibly isolating and caused enormous delays in receiving medical care.

After 3 years of getting worse with no answers and many more confounding symptoms piling up, Shan was mostly confined to their bed, hardly able to stay conscious for more than 2 hours a day. Finally, a specialist helped us start to unravel the mess of symptoms that had had us meeting with one dumbfounded doctor after another. Shan was eventually diagnosed with Ehlers Danlos Syndrome (EDS, a connective tissue disorder that causes joint hypermobility), postural orthostatic tachycardia syndrome (POTS, dysautonomia that causes tachycardia and fainting), mast cell activation syndrome (MCAS, causes frequent anaphylaxis and allergy-like symptoms), a cranial cerebrospinal fluid leak (CSF leak, from the broken nose), Common Variable Immunodeficiency (CVID, increases risk of frequent infections) and craniocervical instability (CCI, hypermobility where the spine connects to the skull). This was and still is an overwhelming and unfortunately incomplete list of diagnoses - there are still symptoms that we do not have a good explanation for.

After establishing care in 2022 with an EDS specialist that is familiar with many of these co-occurring conditions, Shan finally gained medication and treatment that got them out of bed and conscious! We eventually managed to get them an electric wheelchair, and move to a more accessible apartment, so they are finally able to meet most of their basic daily care needs and leave the house. After being confined to our apartment for about 4 years, it’s been a huge relief to be mostly well enough to explore the few shops near our house that they can roll to.

However, their condition goes up and down often due to a number of unpredictable and difficult to manage symptoms and they would benefit enormously from gaining access to additional medical treatment. Without safe transportation and nearly all doctors requiring in-person appointments to establish care, Shan remained unable to successfully access any further specialists until Spring of 2025, despite making many, many attempts to meet with a number of specialists before then. Getting these diagnoses have answered a lot of questions, but Shan is still a far cry from gaining access to treatment and symptom management for most of what they’re up against, and the progress we have been able to make without reliable transport has been glacial. They have repeatedly been hospitalized for reasons that might have been avoidable or less extreme if they had better access to preventative care. We desperately need safe, reliable transport to get Shan to their medical appointments, and to have any chance to improve their quality of life.

Our current transportation options do not work:

Our troubles with accessing safe transportation are… complex. All options currently available to us (and believe me, we have tried many) do not meet Shan’s accessibility needs and consistently lead to injury. They are either wildly impractical and/or outright dangerous.

We are 2 miles from the nearest public bus stop, which is often too far for Shan to wheel safely, and the routes are very limited outside of Denver anyway. There is one wheelchair accessible same-day taxi company that services our area, but it is in such high demand that it has only shown up for us twice out of dozens of attempts. We usually wait 3-6 hours just for them to cancel, which ranges from frustrating (if we’re home and must cancel a medical appointment) to disastrous; if they don’t show up to drive Shan home, they are very stranded without ANY last minute alternative transport - which is especially dangerous because they depend on supplemental oxygen and frequent IV medication! If we can provide a two day advance notice, Medicaid provides medical transport to and from medical appointments only, which we have had no choice but to use many times despite the risks. The roofs heights of these vans vary by several inches, so we never know if the taxi that’s going to arrive will actually be tall enough for Shan to roll into or ride in without their head hitting the top with every bump in the road. More than once, we’ve thought there was enough clearance until a larger bump causes their head to hit the ceiling, which has left them concussed or injured their neck. Many of these vans also have several scented air fresheners that trigger migraines or MCAS reactions that can cause a medical emergency or render Shan too ill to participate in their own medical appointments, which significantly limits the quality of care their doctors are able to provide. The quality of the driver for these taxis also varies substantially - we keep thinking surely even the roughest driver can only cause Shan’s body so much pain in the few mile drive to the hospital for an appointment, but we continue to be shown that is overly optimistic. Accelerating or taking a turn too quickly, not avoiding potholes or old bumpy roads, and speeding through roundabouts are all quite strenuous for Shan. They have described several of these rides as “torture,” and more than once, we have had no choice but to cancel our medical transport return trip and roll several miles home, because the damage to Shan's neck would be less than getting back in the car with the taxi driver that brought us to the hospital.

Currently, our safest option is renting an accessible van for $140/day, subject to availability, that must be picked up in Denver - this is quite out of our way and requires two extra rental days, because we are not able to pick up or return the rental car the same day as an appointment. This is significantly cost prohibitive! We have put off important appointments for several months just because we cannot afford more frequent rentals. These rental cars are all converted minivans, so they also have dangerously low-profile roofs like the Medicaid medical transport minivans, and do not allow Shan to stand or stretch as needed to reposition without fully unloading from the van first. Also, more than once, the mechanical ramps on these rental vans have malfunctioned, which has cost us long awaited appointments or left Shan stuck inside the van unable to exit in the middle of winter.

Without any short notice wheelchair transportation options, when Shan needs emergency medical care and is at their weakest and most vulnerable, we face an impossible choice: we can either use an ambulance or roll several miles to the hospital. Using an ambulance separates Shan from their custom fit wheelchair, which means they will be transported on a stretcher that does not adequately support their skeleton, and their entire hospital trip will be spent in extra pain on a hospital bed. Rolling to the hospital ourselves allows Shan to keep their wheelchair with them and is usually less painful, but exposes them to physical exhaustion, poor weather conditions, and long streets with no sidewalk, shoulder, or streetlights. This hike takes us about 3 hours, and their wheelchair charge and air tanks do not last long enough for us to make a return trip on the same day. More than once, I have had to push their 450 pound wheelchair over a mile because the battery has died. Both options cause more neck strain or injury than would occur if we had our own adaptive vehicle to transport them in their wheelchair. Without a van, we are put in the position of having to make this demoralizing and impossible choice over and over, each time they need emergent care.

Currently, Shan’s greatest risk for repeated hospitalizations is directly related to neck strain. Their CCI can make it difficult to swallow correctly, especially when their neck muscles are overstrained – so it’s especially critical that we are able to minimize neck strain to prevent frequent aspiration and lung infections. Shan has been to the ER or admitted to the hospital 4 times in the last 4 months, and we found ourselves needing to head there again last Saturday. This is happening so frequently, their neck has not been able to recover and heal in the time between trips, so the strain has been accumulative lately - please help us stop this self-perpetuating cycle!

What safe transportation would look like:

Safe, truly accessible transportation for Shan would be life changing. This would look like owning a new transit van that is modified to be wheelchair accessible. It would always be available when Shan needs it, and they would be able to maintain control over a number of non-negotiables: being able to choose a trusted driver, autonomy over the route and driving schedule, freedom to take rest breaks as needed, a manual ramp that ensures they will not get stuck inside the vehicle, control over what chemicals are allowed in the vehicle, room to stow all medical equipment they may need (like an oxygen concentrator) instead of just what we can carry with us, and a high profile roof so their head has clearance and there is room for range of motion exercises, repositioning, and full access to IV medication while inside the vehicle. These features would substantially reduce or eliminate nearly all current transportation related risks, such as emergencies from mast cell reactions/anaphylaxis, migraines, fatigue, excessive muscle spasms, pain and injury from subluxations/dislocations, neck injury, and concussions from hitting the roof of the car. An adaptive vehicle would also come with the life changing benefits of access to community engagement, nature, and most importantly, receiving timely medical care from specialists that could improve Shan’s health and keep them out of the hospital.

How funds will be used to help Shan:

We are hoping to fundraise enough for a new Ford E-transit Cargo Van with a high roof and extended long length cargo space (total estimated cost: approximately $61,000), a reinforced floor and tie downs that secure the wheelchair for transport and meet road safety standards (approximately $5000), and an extra-long manual ramp (less likely to breakdown than automatic lifts and ramps, approximately $4500). Shan’s endurance for being transported safely is pretty limited – they have chronic fatigue and it takes a lot of energy to manually hold their joints together while the car jostles them about, even in their custom fit wheelchair. Our long term goals include further modifying the vehicle so that they would be able to sleep overnight in the vehicle as needed (costs not included in this fundraiser). This would grant them easier access to specialists throughout the whole state of Colorado, and beyond if necessary. This is critical because “accessible” hotel rooms are not accessible for Shan’s particular medical needs, and sometimes their pain is too severe to make a same day return trip home, even if that return trip is just an hour’s drive. The extra cargo space would give us enough room to someday add further modifications that would allow us to sleep in the vehicle overnight, such as a medical bed, refrigeration for IV medication, sufficient off grid energy supply for all medical equipment, accessible restroom facilities, and storage for all medical supplies needed for longer stays away from home.

We have spent the last year preparing to be ready to buy a car by paying off all our debt, but have not yet been able to save up for a down payment. We do not feel we are able to wait to save up for a down payment ourselves, because every month that passes by further delays their care and comes with repeated hospitalizations and car rentals that set us further back.

Raising enough money for a sizeable down payment would lower the monthly vehicle finance payments and make it possible for us to get Shan a safe mode of transport. Fully funding the total cost of the van and modifications would allow us to use what we would be spending on car payments on other disability accommodations that aren’t covered by insurance, like a button-automated entry to Shan’s home, an accessible bathroom sink and roll-in shower, vinyl flooring to replace the carpet we had to remove to manage their mast cell condition, and building out the van so that we could camp in it as needed for appointments since hotels aren’t accessible.

As we have time to write updates, we will be adding more information, like pictures to show more specifics on what van modifications we are planning, and a post from Shan so that they can share their own perspective. We would deeply appreciate any support you can offer, whether that’s a donation or sharing the link wherever you can to help boost visibility for this fundraiser. Any and all support means so much to us!