Izabela's surgical fund

Hello there,

Thank you for taking the time to learn my story. My name is Izabela and I was born with an ultra rare condition called Facial Infiltrating Lipomatosis (FIL), with only 100 documented cases in the world. Although I am 38 years old, I only learned my diagnosis a few months ago. I don’t have the means to cover my entire treatment plan and I am kindly asking for your help to fund the hospital portion of the surgeries needed to correct my malformation.

I have never seen or heard of any other person who looked like me and neither have the doctors I have consulted throughout the years. I have had a few less successful surgeries before when I was a child, and after my last one - 20 years ago, I gave up and decided to accept the fact that I look different. Although I stopped seeking answers, every now and then I would still search the internet for anyone with a similar condition to mine but nothing ever looked, sounded or felt right. Then a few months ago, while scrolling on Instagram, I came across a post of a girl who, like me, had one cheek bigger than the other. At that moment, I just knew that we had the same condition. From her blog, I learned about her diagnosis and saw that she listed a couple of doctors that have had experience with treating this condition. One of the doctors was located in New York City, close to where I live, so I reached out and made an appointment. The consultation and imaging studies confirmed my diagnosis of Facial Infiltrating Lipomatosis, or FIL, which is a congenital overgrowth condition affecting one half of the face. It is caused by a spontaneous gene mutation that affects only some cells. These cells are in multiple tissues, including the facial skeleton. The reason for this spontaneous mutation is not known and the condition is nonhereditary, ultra-rare, and there is no cure. You can learn more about FIL here.

Although I have been living with this condition and its manifestation for this long and those that know me can confirm that I am a happy, confident person, who is positive and full of life, I would be lying to you and myself if I said that it didn't hold me back from pursuing certain opportunities at times. I, like anyone, want to look and feel my best and, for lack of a better term, would like to put my best face forward. As you can imagine, living with a visible malformation could be challenging. Although I don't see another choice but to live, work and do the things I enjoy; to be me and do my best to live a happy life, sometimes I am reminded that I am different, and sometimes it hurts and can affect my days. Now that I have found a team of doctors that have experience working with patients with FIL and are very optimistic about the results they can give me, I feel ready to get the surgeries that would give me more symmetry and bring function back to the muscles in my face.

My surgcal plan consists of two surgeries, which would be done 1-2 months apart. The goal of the first one is to reconstruct the bones and remove the benign bony overgrowth (and I might even get a cool titanium plate too!) and the goal of the second one is facial reanimation by way of gracilis muscle transfer and a nerve graft to improve muscle function, literally bringing my smile back :). Both surgeries are very complex and very costly.

Unfortunately my insurance will barely cover any of those costs. In addition, I have not been able to find any resources for people like me: adults, who are able to work and have some type of insurance coverage. The doctors who will be performing the surgeries have been extremely generous and discounted their fees in order to reduce my out-of-pocket costs. With some help, I will be able to cover their fees, however, I am still looking at a huge hospital bill, times two. And if you got this far, this is where I would like to ask for your help. If you can find it in your heart to contribute anything at all to help me finance these medically necessary and life changing surgeries, I will be forever grateful.

I would like to thank you in advance for your kindness and generosity and hope that it is returned to you tenfold. My hope is to pay it forward and serve as a resource for anyone out there who suspects they might have the same or similar condition and is either looking to confirm their diagnosis, seeks treatment/surgery or the support of the wonderful wonderFIL community.