Contribute to E’s Medical Care and Recovery

Image: Photo of E’s wheelchair at Plymouth Rock.

Hi everyone,

I am reaching out to humbly ask for help in obtaining access to urgent medical treatment that will quite literally save my life. After being unable to afford a necessary treatment, and disregarded by many in the position to provide care, I need immediate access to intensive treatment that can only be afforded with assistance. Within the past weeks, since the initiation of this fundraiser, my condition has worsened dramatically. Especially if you are an ally: if you didn’t give for Giving Tuesday or Day of Mourning, please consider helping me get emergency medical intervention.

It takes great vulnerability to express this openly. In August and Winter of 2022, I quietly went through a major health crisis that made my pre-existing disabilities far worse. The year prior, I was diagnosed with Ehlers-Danlos Syndrome, one of several conditions impacting my functionality. EDS is essentially an accumulation of genetic disorders that affect several systems, such as skin quality, joints, blood vessels, and muscles. This can happen from generational malnutrition that often impacts mixed, native and migrant families. These systems are weakened by EDS; and additional factors such as blood loss alongside Post-Sepsis Syndrome within the past year, have greatly affected ability to move my own body safely. Seeming remission was shortly followed by a relapse of more aggressive symptoms. I suffer from debilitating chronic pain, overall physical fatigue, and weakness as a result. Meanwhile, I have dedicated myself to projects in activism and community while dealing with these excruciating limitations.

Despite “looking normal” at first glance, scar tissue has developed throughout my core and joints, and I exist in extreme soreness on good days. Due to faintness and the pressure on my heart, I can only stand or be active for short intervals. As an athlete and dancer, I hope to heal enough to do these things again, or at least without endangering myself. In addition to these medical issues, I am also a survivor of assault, and suffer from PTSD as a result of my experiences. These body injuries increasingly limit my emotional outlets, and now, ability to work - while I remain on call for sensitive responsibilities I cannot put down. My roles in community do not stop just because my jobs or functionality have. I have labored tremendously to rebuild and stabilize my life in the wake of such physical and psychological trauma, but at this point, I realize that I cannot do this by myself.

Every and any dollar you can give will go toward the costs of my care and recovery, as well as basic expenses while seeking this treatment. My small circle of mostly-adoptive family has gone to great lengths already, and I have one daily care supporter, who will help me through this program. I want to live to see a world where I can continue to do art, and still share joy amongst my kin and culture. Your support could mean the difference between life and death for me, so every bit of it will be deeply appreciated.

Unanimously, specialists for EDS and now, my other conditions are extremely expensive, uncovered, and often highly regional. As unfortunate as this is, I thank you for making sure I get help in a country that actively denies lifesaving care to Indigenous, Asian, queer and disabled people.

Thank you so much for reading, and please circulate this link in your social circles, if you can. It goes a longer way than you could even imagine. I hope for love and warmth for all who see this; thank you for even considering helping me in the journey to a better, pain-free life! My family and I are inexplicably grateful towards your encouragement for a new chapter.

Note: I’ve opted to go by an initial for my privacy, and my support system may help operate or update this fundraiser.

Edited, Dec 29th.

After not meeting the goal in the allotted time, this fundraiser has had to adapt to still create a relevant and timely plan for recovery. Please check the updates section for more details about current state and ongoing treatment efforts.

Presently, with the scholarship no longer offered, we would be charged upwards of $22k for the treatment I need at Biologix Center. This is still something that would greatly benefit my chance at life, though will have to be a longer-term goal for if I get through this: given that we cannot realistically gain those funds right now. All funds raised with the intent of going to Biologix Center will be allocated towards other doctors and out-of-pocket treatment that can get me by in the meantime. I have already been in ongoing medical care, though the entire point of this fundraiser has been that it is not enough to maintain my life. The results of not being able to afford the original treatment center mean that I must pursue other, additional, costly care on top of what I already do with my team. My costs for continuous treatment are now, at minimum, hundreds of dollars or more, each week/month. Rather than one large expensive treatment, this puts a financial burden on my family in a completely different way. We do not know the duration I will need these additional treatments, only that they will have to be long-term until I am cleared in a stable condition.

Here are segments of the original post that have since been changed. Past components of this fundraiser for transparency:

“Before the end of the month, I need to complete intensive care that can only be afforded with assistance. Especially if you are an ally: if you didn’t give for Giving Tuesday or Day of Mourning, please consider helping me get emergency treatment for Christmas. This fundraiser will remain active if we do not meet the original goal, to afford some treatment rather than none.

The Biologix Center for Optimum Health, located in Franklin, Tennessee, offers treatment for my disease that is not available anywhere else. Their specialized, tailored approach to care will offer me a chance to improve my life in a way that would likely not otherwise be possible. It is expansive enough, that it will accommodate to a plethora of the symptoms I have been pained by, while most medical centers do not. Their care is on the cutting edge, and because of that, it is not covered by conventional medical insurance. They have offered me partial financial support aid in covering their costs, but at this point, I am in need of more help to achieve access to this life changing treatment. Note: it is about a week long of specialized intensive care, including hands-on rehabilitation; I’m not moving south.

I’ve been offered partial scholarship for Biologix Center: but after December 28th, they will no longer offer me this financial aid, which leaves me to raise thousands while sick either way. If for any reason, the goal isn’t met and this treatment can’t be afforded, we will put these funds towards the second-best care that we can find. So worst case, I will still receive some kind of preventative/regenerative treatment and cushion for recovery.”

Please check the updates section for greater explanation about this adjustment, and thank you greatly to all contributors.