Join Shilo's Joy Ride: Help Shilo Get Her Wheels!

Hi, my name is Brianna and I'm supporting Shilo in sharing her story to raise funds to regain her mobility. Below is Shilo's story and an FAQ (and alternative fundraising titles if you're looking for a laugh) that she put together. Shilo is a dedicated community member, fierce advocate, consultant and trainer, and has worked tireless for years to serve her people. Shilo has an infectious laugh, a generous heart, and a beautiful way with words of support. She's also one of my very best friends. Shilo's mobility has been declining for the last few years and it's impacting every aspect of her life. After a lot of encouragement, she allowed us to care for her in the ways she's cared for so many of us. Whatever you can offer is appreciated.

Dear friends and family,

It's with a mix of emotions that I'm reaching out to you today. Asking for help has never been easy for me, but as I often remind others during my workshops and trainings, it's okay to seek support when it's needed.

As many of you know, I've been facing increasing challenges with my mobility over the past several years. Chronic pain, fatigue, and muscle weakness caused by systemic inflammation, autoimmune disease, and fibromyalgia have made everyday tasks a struggle. During the pandemic, the closure of facilities like swimming pools, which were essential for maintaining my stamina and mobility, further exacerbated my condition.

Despite my best efforts, including using a cane and rollator, my mobility has continued to decline. Simple activities like grocery shopping or meeting friends have become daunting tasks, often leaving me physically drained and in need of days to recover. Even working has become a challenge, with in-person engagements requiring meticulous planning due to accessibility issues and uncertainty about my physical state on any given day.

A recent incident where I fell and severely sprained my knee while attempting to get into my SUV was a wake-up call. It became clear that I needed a more reliable solution to preserve my energy and enable me to live life more fully. After consulting with my healthcare provider, it was recommended that I invest in a powerchair to enhance my mobility and quality of life.

The journey to finding the right mobility device has been eye-opening, both in terms of the options available and the associated costs. Contrary to my previous belief, medical insurance does not cover the full expenses of mobility devices and their transportation. Navigating this complex process has required seeking guidance from professionals like recreational therapists to ensure I make informed decisions.

I'm humbly reaching out to you today to ask for your support in this endeavor. The cost of a specialized conversion van accessible to accommodate a powerchair ranges from $60,000 to $80,000. While this amount may seem daunting, any contribution, no matter the size, will make a significant difference in helping me regain independence and improve my quality of life.

Your kindness and generosity during this challenging time would mean the world to me. Please know that your support, whether through a donation or by simply sharing this campaign with your network, will have a profound impact on my life.

Thank you for taking the time to read my story and considering supporting me on this journey.

With heartfelt gratitude, Shilo.

**To support transparency I'll post receipts on this Go Fund Me page as I purchase the items I need.**

For those that would like more details or to learn more about the process I'm going through see FAQ below:

Why don't I use my health insurance to pay for my powerchair?

Medical insurance will only pay for powerchairs or scooters if you need to use them in your home. They will not pay for them if you need to use them outside your home to go to medical appointments, walk your dog or just have a more enjoyable life. In my case I don't need a powerchair in my home because I use my cane or walker…also I don't live in a mansion.

Why don't I use my health insurance to pay for transporting the powerchair?

Medical insurance doesn’t pay for transporting the mobility devices and this includes trailers, lifts or conversion vans.

Why a conversion van instead of a lift or trailer?

Well it's not as simple as you might think. You have to know what kind of powerchair you are going to get and specifically how much it weighs. Not all vehicles have the tongue weight capacity (different than towing) for a lift and my current vehicle doesn't. That leaves a trailer as the other option. My concern about a lift or a trailer is that I would need to tie down the powerchair (four straps) and cover it with a large cover to protect it from the weather or debris, then walking to my car door and getting in. On a good day I could probably do this without needing to sit down and rest, but on a day with body pain and fatigue this is unlikely. When I strain my body to the point that my muscles start stiffening and stop working I start to have a panic attack.

Why do conversion vans cost so much?

There are only certain vans and a couple SUVs that are able to be converted. Those that can be converted are purchased from the manufacturer at a retail price and then taken to one of two companies that put them through the conversion process which entails stripping away much of the car including lowering the floor 10-12 inches from the center of the car past the dashboard, adding an automatic ramp, taking out the center row of seats, putting in rubber flooring, adding 180 degree driver and passenger seating tracks for easier transfer from powerchair to seat and adding a kneeling system which makes the car lower to the ground of the ramp and entrance. There are many other features that are added as well. This is a costly and time consuming process that requires specific technical skill and materials. This process typically costs $20,000-$30,000.

What other costs are involved with a conversion van?

There are a couple of different kinds of insurance I'll need to get including a more expensive regular car insurance because the vehicle is worth so much money if it were to be damaged or totaled.

I will need gap insurance to cover the amount of my loan gap if it were to be totaled and the insurance company deemed it being worth less than my loan.

There's also a type of extended warranty insurance that will be needed to cover engine repairs as well as the expensive automation features like the ramp or kneeling system if they were to break.

Then there is preventative maintenance of the van and the powerchair which is important for safety as well as making sure the mobility equipment run properly for years to come.

Why don't you know how much the van will cost?

There's a few reasons for this. I wanted to start fundraising now to have a large down payment so my monthly payments would be reduced to $400 or less per month. Once I get that financing, if I paid a large amount on the loan it would make it so that I paid the loan quicker, but wouldn't lower my monthly payments. The other part of the situation is that there isn't a lot of conversion vans available at anyone time. I have an appointment to go on March 1st to visit one of the mobility companies that has new and used conversion vans because I'm not sure which model and years of vans/suv would work for my needs in particular. They all have different dimensions and ramp/door widths and heights are different too. There are a few used vans available, but most are new. I will update when I know more specifics and will provide receipts for transparency.

This all sounds overwhelming how do you know you won't get taken advantage of?

This is one of my concerns too. There's so much to learn and I don't know what I don't know. But I did find a knowledgeable recreational therapist who lives in the Portland area that has helped many families and adults with this process. She has relationships with mobility companies in the area and workers at those companies that she trusts. She is going with me on March 1st to look at vans and is helping me get access to a powerchair I'm wanting so I can try it out and see if it will work for me, my access needs and my body. She's already brought up aspects of this process I didn't think of and is helping me with options and choices. My best friend, Brianna, is also helping me through this process and will be joining us on March 1st. Disability justice is about community and mutual aid.

Other costs associated with this process:

When you have the powerchair and the conversion van, how will it impact your life?

Alternative fundraiser titles (because laughter is medicine):