Support Zoë Baker's Fight Against Chronic Illness

Hi, my name is Karen, and I want to help my daughter, Zoë, with fundraising to cover her significant medical expenses. My husband and I are both retired and have been helping as best we can including supporting her financially during the year she was on Leave Without Pay from her job (which ended in July) and receiving treatment for her chronic illnesses. She was again on LWOP from early September until this week recovering from a radical hysterectomy at the age of 33. As a parent it has been extremely difficult watching the light in Zoë's eyes dim as her world became completely subsumed by chronic pain, from her endometriosis and other gynecological illnesses, fibromyalgia and central nervous system sensitization.

Zoë, my husband and I have been doing our best to keep up with her medical and living expenses. We have negotiated medical payment plans where possible to cover the approximately $50,000 out-of-pocket costs of medical care annually. But we struggle to keep up with the financial burden. We hope by seeking help to reduce the financial burden of the huge medical costs we will see more of the happy, adventurous, girl (and now young woman) we know so well, and deeply miss.

If you are able, please consider donating to support my daughter's medical expenses. Every share means a lot. Thank you.

Here is Zoë's journey to this point and why we are asking for help:

Hi. My name is Zoë Baker. I live in Washington, D.C. During an extremely difficult year medically that almost cost me my life twice, I was forced to go on leave without pay from my job. While receiving treatment for 11 months I had depleted all of my leave while struggling to cope with my chronic pain and the many related medical appointments and expenses. This came after several difficult and financially burdensome years for me because, as with many women’s medical treatments, many of my medical expenses were not covered, or fully covered, by my insurance.

Although I have returned to work with accommodations and a reduced schedule, the monthly expense of ongoing treatment exceeds my ability to pay the out-of-pocket costs. My parents are both retired and have been assisting me as best they can but their fixed income and resources are not enough to offset the crippling medical cost. I care deeply about my work helping others and want to continue that work. I have selflessly devoted most of my adult life to refugee/asylee and immigration law and issues, making it difficult to cover all my medical expenses and basic necessities.

For example, one of my medications that insurance refused to cover despite numerous appeals and letters from my doctor explaining why it was necessary cost me approximately $1,200 every six weeks. Another example is the treatment I currently receive to manage my medical conditions ranges between approximately $700 to $850 out of pocket monthly. Again, insurance continues to deny coverage after exhausting my appeals. Insurance requires me to submit bills after each visit for reimbursement and I have done so, but I have yet to be reimbursed for a single visit with my specialist (dating back to 2021) as my insurance continues changing the denial code and refuses to reimburse me.

This past May things culminated in an especially dire way after I was sent to the ER with a new and unfamiliar pain. I was told that the emergency room doctors could not help me but I needed to be seen urgently by a specialist. I saw several doctors who told me that because I am medically complex I needed to find someone with more expertise in my specific conditions. It was a huge relief when I was finally referred to such a surgeon in mid-May, 2024. Because of the numerous medical interventions I had unsuccessfully tried up to that point it was decided that a radical hysterectomy was the best next step to try to alleviate the severe chronic pain I had been experiencing over the last several years. However, I learned my surgery could not take place earlier than September 4, 2024.

I am currently 8 weeks post-op from having to make the impossible decision to have a total hysterectomy, bilateral salpingectomy, and excision surgery at thirty-three years old. This was my eleventh major and fifth extensive excision surgery in just over four years. I have never actually made it through a full recovery cycle yet, despite traveling to be treated by some of the best excision specialists in the world. Many women have one excision surgery and never need any other intervention. My endosalpingiosis and endometriosis are more aggressive leading to recurrences, some just a few months post-surgery.

I want to have children and was worried that I would not be able to do so given the need to have a hysterectomy. Unfortunately, my one cycle of egg freezing prior to surgery was canceled, requiring me to wait until waking up post-surgery to learn whether I was able to keep my ovaries and have a chance post-surgery to do a cycle of egg harvesting. Fortunately, I was able to keep my ovaries for now and will eventually need to make more difficult decisions when it comes to growing my family.

Thank you for taking the time to learn about me and my journey.