Hello my friends! My name is Aster Pedersen-Pettway and I could really, really use some help right now. I was born with a mutli-systemic condition called hypermobile Ehlers-Danlos syndrome, or hEDS. While this disorder presents differently in everyone and has various levels of severity of presentation as a result, I am unlucky enough to have a very severe case with a lot of complications - the worst of which being both immune and neurological.

One of the most major issues that I deal with are dysfunction of the nerves in my smooth muscles - specifically my bladder and my entire GI tract - due to a combination of autoimmune autonomic neuropathy and currently untreated spinal instability. This neurological dysfunction has caused me varying degrees of paralysis in both my gastrointestinal and urinary tract, including bladder failure and severe difficulty with swallowing, digesting, and removing waste from my body. My dysfunctional immune system also plays into this, causing me to be especially prone to treatment resistant UTIs and extreme difficulty physically tolerating the treatments needed to get rid of them. Because of this, I have developed urosepsis several times within the last year. Unfortunately, developing sepsis even once can make you more prone to developing again and often to more severe/dangerous levels as frequency increases. I am reliant on a central line and more medications than I can consistently count due to these complications, among others.

Due to the repeat urosepsis, my care team and I have opted for me to switch from an indwelling catheter to a urostomy - specifically a radical cysstectomy with ileal conduit. My surgery will be removing my bladder and several pelvic organs during this surgery. He will then be cutting out a piece of my intestine to attach to my kidney ureters and create a stoma, allowing for my kidneys to drain into a bag attached to my abdomen. It is a very much permanent and serious surgery that comes with a lot of risks but the risks highly outweigh the benefits at this point and are sure to both extend and improve my currently rather poor quality of life.

Because I am no longer able to function, let alone work (I am about 90% bedbound) I also struggle immensely with finances. I have been largely housing unstable and at times due to this financial difficulty - the stress of which only worsens both my physical and mental well-being. At the moment, I am in need of round-the-clock caregiving - something that I do not currently have access to for multiple reasons. I have very little to no physical support in my day-to-day life and am constantly scrambling to cover bills every month. My medical care is also quite unreliable due to the complexity of my case, making it hard to find specialists that are able to properly assist me in my survival. Alongside the already difficult to deal with housing instability, I will most likely have to move out of state in the near to receive neurosurgical care that would help me avoid further neurological deterioration and subsequent death.

Many of my needs are largely unmet at the moment, a large number of which are due to a lack of finances. Because of this, financial assistance is extremely important to my survival. As someone who feels a lot of shame in asking for help in general, crowdfunding can be really hard for me and often feels demoralizing. That being said, I don't have much of a choice when it comes to reaching out for help. Any assistance raised in this fundraiser will go towards the following -

-Pursuance of stable housing

-Medical equipment, supplies, and treatment not covered by insurance

-Private caregiving (temporary - just until I am able to receive it through my health insurance)

-Food and toiletries

-Transportation to/from medical appointments

I would greatly appreciate any sort of assistance. Things have been really difficult and I try my best to remain optimistic but it's really difficult when the stress never ends. At this point, it's hard to see a future for myself that is survivable, but I work very hard on staying optimistic nonetheless.

Anyways, that's all I have to say for now. I am currently inpatient due to yet another recent development of severe sepsis, as well as preparation for my surgery. Sending you all love!

(P.S. if any of y'all prefer using other methods of donation other than GFM as a platform itself, here is a current list of my other paylinks. Thank you in advance!

Ko-Fi - @spaceyfaery

Venmo: @spaceyfaery

Cash app: $spaceyfaery

Paypal: @Asteronauts)

Thank you all!)