Update as of 4/15/2025

My DME (Durable Medical Equipment) provider called late last month to say I had 30 days to get coverage from insurance or their charity program, or they will have to come and take the ventilator & oxygen concentrator from my home. I currently use both due to Nocturnal Central Hypoventilation & Central Sleep Apnea; Both of these conditions mean I DO NOT breathe when I sleep and I REQUIRE the ventilator for non-invasive ventilation & oxygen to LIVE. This means the LIFE SUSTAINING & LIFE SAVING equipment will be TAKEN AWAY from me by the end of this month!!! I am having to look into getting a used & refurbished ventilator online if I cannot get coverage and will lose both of these machines (I am receiving an old oxygen concentrator from my aunt, so I will not need to replace that at this time). All money already raised and anything more I get at this time, will need to go towards getting the used & refurbished ventilator, but once we can pay for that, the money will start going back towards the Neuropsych testing I really need done, but has had to be rescheduled. I am needing to raise the amount of this fundraiser as well, because the used & refurbished ventilator is $5,000 to $7,000 and was not budgeted into the total of this fundraiser when I started it. My sincerest apologies for that, we just did not know this was going to happen when I started this GFM campaign!!! With all of this said; If you have any way possible to help, whether sharing or praying or donating or anything & everything in between, it is all so so so appreciated <3

Hello! I know this is a long read, but please stay for a moment and read as much as you can if you have the time & energy :)

My name is Madison, I am 28 years old, I live just outside of Dallas Texas, and I am chronically ill, disabled, mentally ill & neurodivergent. I have been sick since birth with a myriad of symptoms & diagnoses originating because of different genetic conditions; I wasn’t expected to make it past 5 years old, the doctors told my parents to take me home & make me comfortable when I was first diagnosed; So I definitely was not expected to make it to 28 years old!

I am a passionate accessibility advocate raising awareness about all things disability! I was able to make the Dallas LGBTQIA+ Pride Parade accessible — with help from the local Oak Lawn United Methodist Church (OLUMC) in Dallas as well as the Dallas chapter of The Human Rights Campaign (HRC) foundation — for the first time in its 30+ year history back in 2017 & 2018. The parade is now always made accessible by the organizers! I have also worked with the Dallas Parks & Recreation Department on furthering accessibility in our local parks & playgrounds!

I have been diagnosed with over 25 health conditions, I take 26.5 pills daily with a total of 17 different medications, I have 18 different specialists and I use multiple different types of mobility aids depending on my symptoms; These aids include a cane, a rollator, a manual wheelchair, and a motorized wheelchair. I also use a non-invasive ventilator & an oxygen concentrator any time I sleep. Safe to say, I have multiple things going on that already cause me chronic issues.

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Now you are probably wondering why I made this GFM to begin with, so here it goes…

In March of 2024, I was out visiting east Texas to housesit for my aunt and was out running some errands with my grandmother when the car we were in was t-boned on my side and they had to use the jaws of life to open the passenger side door where I was sitting to get me out of the car. They took me & my grandmother by ambulance to the closest emergency room where the doctors took CT scans of my brain & body, which revealed an acute subdural hematoma (brain bleed) and a concussion. I spent a night inpatient in the Neuro ICU at that hospital for further monitoring because of all my potential complications & my complicated medical history. I ended up with some symptoms of the brain injury for a little bit, but I was doing better by a couple months after the accident. Unfortunately since at least September of 2024, I began having symptoms that are consistent with them being brain injury related and we (me & multiple of my specialists) believe that these symptoms have been greatly exacerbated by some very intense stress in my life for the past 8 months or so. My Neurologist has now asked that I get Neuropsychiatric/Neuropsychological testing done when I can afford it it to get further information on any deficits/difficulties I may have so we can then make further decisions on how best to treat/help/support me at this time & going forward. If you are in the medical world, you know how expensive Neuropsych testing can be even when you have the best insurance coverage. Since June of 2024, I have had ZERO insurance coverage because my Medicaid & the Medicaid waiver I am/was on removed me unexpectedly & unfairly from the program and have so far upheld their decision to remove me even after multiple appeal attempts; I have one more appeal attempt before I have to get further professional legal counsel. This is what has been causing such extreme stress to trigger new brain injury symptoms; I have had to stop at least 3 different medications that were extremely helpful for me and I’ve also had to reschedule or cancel almost every single doctors appointment I’ve had since June of 2024; The only exceptions I could make have been a few Psychiatry appointments, 1 Endocrinology appointment, 1 Cardiology appointment, and 1 Neurology appointment because of the cost of them without insurance. I’ve also had 3 different emergency room visits since September of 2024 because of symptoms my doctor’s felt were urgent enough to warrant further evaluation as soon as possible and the ER is the only place that would allow me to get treatment without refusing me & without needing to pay upfront. All of this to say, I will be paying for my Neuropsych testing out of my own pocket completely in addition to thousands of dollars in medical debt since June 2024.

I will absolutely be getting a payment plan figured out with my hospital & applying for their financial assistance program so I won’t have to pay it all at once up front & it will hopefully be a little less expensive, but it will still be extremely costly to do this testing in addition to already owing so much for the absolutely necessary medical related visits that have not been covered at all since getting removed from my Medicaid & the Medicaid waiver program. For these very needed medical tests, doctors appointments, ER visits, and medical equipment rental costs, it means I have now accumulated over $17,000 in medical debt and that number is quickly approaching passing the threshold of $20K with the additional cost of this testing, and I still have other needed additional medical procedures done that just won’t be doable for a while. I just do not have thousands more to go towards the Neuropsych testing at this time and will most likely never have nearly enough to pay off all of this new medical debt.

It will be almost $3K ($3,000) for the Neuropsych testing + the over $17K ($17,000) in additional medical debt I owe — Anything I can fundraise up & above the cost of the Neuropsych testing will go directly towards the medical debt I’ve accumulated since June 2024.

Please be assured that any amount of money donated, even the smallest amount, is greatly appreciated!!! I also deeply, deeply appreciate any & all good thoughts, prayers, good vibes, kind words, duas, and anything else you might feel comfortable doing for me at this time for a GOOD/GREAT resolution and that my Medicaid & Medicaid waiver coverage can be reinstated someway, somehow as soon as possible!