‘My cheek was swollen. The doctor said, ‘I’ve never seen anything like this before. Your life expectancy is 6 years old.’: Woman gets Facial Infiltrating Lipomatosis diagnosis after 22-year battle

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“I was born with a bump on my left cheek. At birth, doctors thought my cheek was swollen because of the position I had laid in. They told my parents it was nothing and would go away soon. Weeks went by, but nothing changed. After months they decided to run some tests, including a MRI. It turned out to be a benign tumor with mixed lipomatosis and lymphangioma. A surgeon told my parents he could easily fix it. My parents believed him, and at the age of 1, I had my first surgery.

By the time I had recovered from this invasive surgery, the tumor had already grown back. The doctor gave it another try when I was 2 years old, but again, it grew back immediately. During my surgeries, they damaged facial nerves causing part of my lip to be paralyzed. My doctor had never seen anyone like me before and told my parents he couldn’t do anything else. All we could do was wait and see what would happen. I had a life expectancy of 6, and my parents were told to be grateful for each day we would have together. I grew up in fear for the unknown.

My parents wanted answers and reached out to doctors all over the world. They sent letters to doctors in the USA, Australia, Israel, Taiwan, Morocco, Germany, France, Italy, Greece, Belgium, and The Netherlands. They all replied the same: ‘We don’t know what she has, we’ve never seen it before, and we can’t do anything.’ A few doctors offered to bring me in for surgeries and see what would happen. Luckily, my parents knew better.

Years went by, and against all odds, I was developing well. I didn’t have learning disabilities (as they expected me to have) and my tumor used to grow proportionally. I was enjoying my busy life as a competitive swimmer until everything changed when I hit puberty. My tumor was growing faster than I did. Until the age of 16, we lived in fear: would it grow towards my brain? Would I become blind or deaf? Or worse?

In that period of time, I was very sick. I had unexplainable headaches, passed out often and got random nose bleeds. I was exhausted and could sleep all day. I stayed home most of that school year and only participated in the most important activities. At the age of 12, I had to switch from elementary school to high school. My parents decided it would be better for me to go to a special needs school for people with chronical illnesses. At this school, everyone was going through something: some kids were in a wheelchair, others had severe epilepsy, and some were battling cancer. It was a safe place to grow up with my health problems and facial difference.

Courtesy of Wilma Westenberg

Everywhere I go to, I have to deal with daily stares, questions, whispers, pointing fingers and bullying. I grew up thinking I was the only one in the world and always felt alone. At the age of 12, I started my own blog to share my story. I was looking for answers about my rare condition and this way I could tell ‘those annoying people who randomly asked me questions on the street’ to go take a look on my website. At the age of 14, my blog won a big national prize, and I got some media attention. I received many supportive messages and emails with advice on where to seek answers.

During puberty, I started worrying about boys and dating. I was afraid boys wouldn’t like me. Luckily, I didn’t have to worry too long because at the age of 14, I met Koen. We’ve been together since the day we met, and he has never made a big deal out of my facial difference.

Courtesy of Wilma Westenberg

Three years ago, I started having questions about having children and heredity. I decided to do something with the tips I received via my blog and reached out to an expertise center for vascular anomalies in the Netherlands for a second opinion. They had never seen anyone like me before, but promised me to help me find a diagnosis. Actually, all I was hoping for were answers about hereditary. A diagnosis was out of my head.

After 2 weeks, I received a phone call: they found some similar cases in literature and were confident I had Facial Infiltrating Lipomatosis (FIL). At first, I was hesitant: for 22 years, nobody could tell me anything, and now they were able to diagnose me within 2 weeks?

I immediately started searching on Google for others with the same condition, but couldn’t find anything. I kept searching and searching and finally on page 10 of Google it was there — a blog written by Erin, a mom whose daughter has the same condition. I quickly read some of her blogs and left a comment. I explained I just got diagnosed with the same condition as her daughter and my wish to get in touch.

Courtesy of Wilma Westenberg

Erin reached out to me and added me on Facebook. It turned out she knew a few other moms whose children had the same condition. I was in shock. After being alone for 22 years, I saw several children who looked so much like me.

I immediately knew I wanted to meet them. My husband and I love traveling, and we had already scheduled a big trip. We decided to change our travel routes to incorporate as many meetings as possible. During that trip, I also met Erin and Josie, which was so surreal, as it was only a year after getting diagnosed and leaving that comment on her blog.

Courtesy of Wilma Westenberg
Courtesy of Wilma Westenberg
Courtesy of Wilma Westenberg

I also met Vela, a 4-year-old girl (at that time) from San Diego with blond hair and blue eyes. She reminds me so much of myself; I always call her my mini-me. In 2018, Koen and I got married in Las Vegas with Vela as my flower girl.

Courtesy of Wilma Westenberg

Being able to connect with everyone was truly life changing. They all feel like brothers and sisters, and I call them my extended family. So far, I’ve met 14 people with FIL, and I’ve visited places I would normally never go to. I never had the desire to go to Brazil, but when I met Luisa (5) and her mother on Facebook, it became a top priority on my travel list. I was able to visit them in 2019.

Courtesy of Wilma Westenberg
Courtesy of Wilma Westenberg
Courtesy of Wilma Westenberg

Crochet is my passion, and I’m working on a special series of patterns dedicated to/inspired by my extended family. I design free patterns which are named after them, and I incorporate specific colors and details based on that person. When I meet them in person, I give them the piece I’ve designed.

Courtesy of Wilma Westenberg
Courtesy of Wilma Westenberg

I’m excited for the future and all the new friendships we will make. The last 2 years, the Facebook Group has grown to more than 50 patients from all over the world. Most of them are moms with younger kids. So far I’ve met 14 people all over the world, and I hope to be able to travel again soon. There are so many places I want to go within the next few years to meet extended family: Canada, Russia, Colombia, Australia… Within a few weeks, I’m going to meet with a girl from Germany which I’m really excited about.

Living with a facial difference is hard, but knowing I’m not alone and the support from my extended family makes it easier. I hope the kids with FIL won’t feel alone now that they grow up with a big extended family. My home is their home, and I can’t wait till they get old enough to visit me one day.”

Courtesy of Wilma Westenberg
Courtesy of Wilma Westenberg

This story was submitted to Love What Matters by Wilma Westenberg. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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