Gustavo’s Story

Site created on March 10, 2019

Anybody who knows Gustavo will tell you he’s a lover. Whether it’s volunteering with sick kids at the Ronald McDonald house, tutoring his peers in Spanish, or playing with his little sister Jamie, he always finds a way to make those around him feel cherished. But the thing about Gustavo, is that he is a fighter too.

Gustavo came to the U.S. from Chile when he was four years old to receive treatment for a 1/million genetic disorder known as cloves syndrome which causes his left leg to grow uncontrollably. His mother, only 24 years old at the time, didn’t speak any English, yet she never let the language barrier slow her down. Soon after arriving doctors told them they would have to amputate Gustavo’s foot. Mirroring his mother’s determination and strong will, Gustavo worked with his team at Mayo Clinic to get up and moving. Following the initial amputation, Gustavo needed almost yearly surgeries to help keep the size of his leg down receiving as many as 100 stitches at a time.

Despite the physical strain on his body, and the mental strain associated with hospitalization, Gustavo developed an unrelenting positive outlook on life. He soon became known by his classmates for his big smile and witty jokes. His friends would often remark that it was hard to see Gustavo as sick, when he seemed to be enjoying life more than most. Gustavo graduated from Mayo High School in 2014 with honors and enrolled at Gustavus Adolphus College that fall.

While in college Gustavo joined a multicultural fraternity committed to promoting diversity on campus. He volunteered with events on campus to help feed local homeless populations and worked in the social science lab documenting the brain’s response to music. He worked hard, graduating with a bachelor’s degree in psychological science in 2018. At college, Gustavo also met Matti, who after a year of persistent flirting agreed to a movie date with him. They have now been together for three years and recently moved to Chicago where Matti is in graduate school.

Gustavo had intended to pursue a graduate degree in
clinical psychology with the goal of helping sick kids to cope with the strain of chronic illnesses and hospitalization. He was working on applying to jobs when he developed a cough that wouldn’t quite go away. After much investigating and failed treatments for pneumonia we got the news. Angiosarcoma. A rare and aggressive form of cancer that was not only in his lung but spread throughout his body. The doctors estimate without treatment that Gustavo likely has 6 months. Ever positive and determined Gustavo has decided to pursue treatment that may extend his life, but has expressed worry about the financial strain that this may place on his family. (Gustavo’s little sister Jamie adores him, and he adores her. The two of them and his parents, Patty and Dave, are as close as they come). 

We appreciate every single note and word of encouragement....they mean more than you will ever know. If you would like to donate directly to the family click on the "Ways to Help" link above to get to the GoFundMe campaign. (Note: Donations to Caring Bridge (tributes) go towards supporting the Caring Bridge foundation). Don't feel obligated as your thoughts and friendship are more than enough!

Newest Update

Journal entry by Patty Berntson

Dear Gustavo🦋, a year ago today we lost the war against the horrible disease that took you away from us.
You fought so hard over the years and overcame so many challenges that life unfairly put you through, not only with your health but socially too. 
You always were so brave, we always admired your tolerance to the pain. We think that you are some kind of super hero. We will always wonder what level of pain you were really in. 
I like to remember your smile. I find it very difficult to look at your pictures from the last stay in the hospital. I like to remember you healthy and happy, smiling, playing monopoly and video games, joking around, just happy!
The last year has been very difficult for us. We miss you so much Gustavo. 
After you passed away and the clinic took what they needed from your body (as you wished to donated your body to science), I got your ashes. Some went to Matti, she put them in your wedding tree. I have some in an orange heart urn. We built an area with some of your things and pictures. We put butterflies and dreamcatchers around the house. We put some of your ashes in a tree that Matti gave us. The rest of your ashes I have in my room. Some day when I am ready, I will take some to our family in Chile.
Oh Gustavo, we miss you so much. We are constantly talking about you, and bringing up all of the wonderful memories. Sometimes we laugh and cry at the same time. We have pretty funny stories to remember.
Matti is still in a Chicago, she misses you so much! She is very busy with her school and her internship. We dont see her as much as we wish, but some day we will live closer again. Jamie, is doing good, she misses you a lot. She misses her brother, her partner in crime, her teacher... her friend. She has your same sense of humor, she makes us laugh, just like you did, sometimes with inappropriate jokes. I am sure you would enjoy that. 
I am doing okay, I work a lot, I guess that is how I can keep my mind busy. I like to sleep, that way I can dream about you and feel you closer. I have good and bads days, I guess that is normal. These last few weeks I keep remembering when you said "mom, it could be worse" and I told you "what can be worse than losing you?" Now I realize that it could have been worse. Last year when we learned that you were going to die, so many people reached out, they called, sent messages and the ones who could visit spent time with you. You told me, "mom this will be a time to reconnect with people". You could not believe how popular and special you are and how much people love you. You wanted to spend the most time possible with everyone. You made big efforts to be awake and alert. You wanted to make sure you were able to talk to people and let them know how thankful you were that they are part of your life. You passed away surrounded by your loved ones. We were there hugging you, kissing you, holding your hands. Your family, your friends, everyone who could be there with you were there, in person or spirit. Today I think about what you told me... "mom, it could be worse" If this nasty virus😷 was around last year, things could have been worse. Patients in the hospital now can have a limited number of visitors and in some cases they cannot have any. That would have been terrible for us...I guess it always can be worse.😷
Now let me tell you about Dave, he does not like much attention, but I have to tell you that he is the best! He is doing ok, but he really misses you too. He always bring up memories  of you. He is my rock, I dont know what I would do without him. He pushes me on those days when I just want to be in bed and cry, or when I just want to work and work. He pushes me to do things. He takes care of Jamie and me, he promised you that he will look over me, and he is. He wrote you a song, he worked really hard on it and it is beautiful. Gustavo, we miss you so so much! You are and always will be in our hearts. You are our kind soul who overcame lifes obstacles and never quit fighting. A true inspiration to everyone in your life! We love you and we will always be proud of You! 🦋❤🦋❤🦋❤🦋
Credits
Video made by 🎬 Paola Herrera B. 🎬
Music made by 🎶 Dave Berntson 🎶
https://youtu.be/or41SZwLxpI
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