Support Amy's Fight Against MAL Syndrome

Hello. My name is Amy. I need to start this GoFundMe in order to cover medical costs, hotels, and lost wages for two upcoming surgeries. I have MAL syndrome, which is where my celiac artery is being restricted by the ligament that holds it in place. It is extremely rare, as it is because of abnormal anatomy. It is very painful to do most anything, including eating. In the past two years, I have lost 140 lbs. due to not being able to eat. This also leaves me weak, and unable to work an actual job. I do get paid for 20 hours a week to take care of my parents. Because of the pain, I have to go to the ER every few weeks for pain management.

There is a surgery that can be done to release the ligament. Finding a surgeon who not only has heard of my condition, but is also willing to perform the release has taken me three years. I now have a surgeon, Dr. Lau, at Loyola in Chicago that has agreed to perform the release. He has said that at best, my life will be 20% better. It is a 3 hour drive to get there from where I live. I need to have more testing there before surgery, but have to be there first thing in the morning, and not eat or drink anything before. I will need to get a hotel room for the night before each time.

Since this is an extremely risky surgery, I have to be logical about what should happen if I don't make it out. My surgeon has given me a 40% chance of getting off the table. I have been trying to pay off all the debts I have so that if I do pass, my debts aren't passed to my parents, and I can have a proper funeral. I have been able to pay off my car. I have several store credit cards that I need to pay off still.

If I do survive the surgery, I will not be able to work for about 8 weeks to recover. I will still have bills, and need money to take several trips back to visit the surgeon.

Also, recently it was discovered that I have a golf ball sized cyst on on right ovary. I have an appointment in two weeks to find out when I can have surgery to remove it. I will be out of work to recover for at least 3 weeks after this.

Almost two years ago, my doctor told me to start doing my bucket list items while I still can. There is no getting "better" from MALs as it is a chronic illness. My bucket list mostly contains going to concerts to see my favorite bands and musicians. When I still had three jobs, I was able to travel to see bands all around the Midwest and East Coast. Currently my car is not working. It needs a new battery to start with, a new tire, and there are pretty significant oil and antifreeze leaks. I need to get my car running and dependable again desperately. Unfortunately with only having one part time job, I have not been able to save enough money to fix any of this. I want to be able to finish off my bucket list before the big surgery in January. I feel like I have so much more living to do, so many places to visit, so many concerts to attend. Although it is painful to endure a concert, and I get incredibly weak, it is really the only time I feel fully alive.

This chronic illness has robbed me of so many things. It is destroying my body, my mental health, and has robbed me of a normal future. I am signing up for disability as this is a forever thing. My doctor told me they are currently 11 months behind in processing it. I hate not being able to have a decent job or two. I have always been a hard worker and fiercely independent. Asking for help and not being able to work is the last thing I want to do. Since I can't, I have created this GoFundMe to have the funds to be able to get to Chicago for medical testing and surgery, fix my car, and pay off the debts that I have. Any funds generated beyond these needs will go to paying for my bucket list trips and to help out others who are also in need because of medical reasons.

I will have total transparency with showing prices of hotels, my exact bills, and where the money is used. I will be consistently updating where I am on my medical journey. I know a lot of people have no way of donating, but I appreciate it anyone could share my story. I am in a desperate situation that I cannot physically get out of on my own. I am hoping the universe has seen the good that I have put out and balance things out. If you made it this far, thank you for reading this. I have an Instagram account (mercgirl57) if you would like to follow my journey or see more of my story.