Diagnosis
In 2020, Emiliano Bermejo’s parents sought medical care after he exhibited several troubling symptoms. Initially, doctors dismissed his issues with walking and swallowing as minor concerns, but it later became clear there was a more serious diagnosis at hand. After seeing Emiliano’s hands shake uncontrollably, his parents took him to a neurologist who was able to reveal the brain tumor, otherwise known as DIPG in March 2020. After being told there were few options that would improve the condition, Andrea Aguilar, Emiliano’s mother, knew that they could never give up. Driven by hope and determination, Emiliano’s family went to extraordinary lengths, traveling from Mexico to the United States in search of life-saving treatments. While they faced many challenges along the way and must manage the condition to this day, they still remain positive about the future.
Challenges
Emiliano’s parents, Andrea and Josue, both worked to support their family before the diagnosis. However, everything would soon change as the condition impacted their lives. They were forced to make a sacrifice and Josue gave up working to care for Emiliano full time. Andrea further explained that there are many cost-related setbacks associated with medical care and treatments. With it already being difficult for Emiliano to be accepted for certain trials, Andrea also looked at trials being held in the U.S. However, the process still remains difficult because it would require monthly travel to the U.S. as well as they don’t have insurance coverage there.
“It has changed our lives radically, I can say”, she remarked.
As Andrea reflected on Emiliano’s journey, she also recalled a particularly tough time after a clinical trial with John Hopkins. Because of nutrition problems, he had been given a feeding tube and experienced many complications.
“His heart stopped 3 times,” Andrea told us.
She went on to explain, “that’s how he lost his mobility on his right side and also his speaking.”
DIPG has brought on many challenges for their family, but Andrea speaks on how the emotional aspect has been the most difficult to manage. Being a part of the CRF community, they see all the success stories, but also all of the warriors who lost their lives and all of the parents who lost their children. Despite how devastating it is to watch, they know they need to stay strong for Emiliano and continue to be hopeful.
Staying Positive
Andrea spoke about how happy Emiliano always is and that because he’s enjoying life, she can’t stay sad for long.
“I continue to be positive because of Emi (Emiliano).” “He’s always smiling, he’s always happy.”
Emiliano started English lessons just so he could talk to our Founder John “Gungie” Rivera’s daughter Sophie because that’s the kind of person he is. “When I am (sad), I just look at him and I’m happy.”
Emiliano loves spending time with his family, swimming, listening to music, horseback riding, and painting. After losing mobility in his right hand, he now paints with his left and has started horseback riding again. Andrea firmly believes that “accepting that you are going to die should not be an option.” She fights for him to be there with her. Andrea’s advice to those who are going through a similar experience is “to be open to new things so that traditional medicine is not everything.”
CRF’s Impact
Andrea recalls how she first met John, who is the founder of CRF, during a time when they were actually researching U.S. foundations that could help fund clinical trials. Her niece, Nicole, reached out to John, which led to their initial connection. After talking for a while, Andrea says that John recommended Dr. Mark M. Souweidane, one of CRF’s medical partners. From there, everything fell into place, and the rest is history.
John’s emotional and financial support has been life-changing for Andrea. As a parent of a child diagnosed with D.I.P.G., having someone who truly understands the challenges has been invaluable. John’s presence has helped her navigate the life-altering changes that come with this difficult journey. Andrea expressed the importance of this connection, saying, “Sometimes when you share your story with someone else, even though they try to understand, they can’t; because they’re not living the same situation.”
She added, “Having a friend who understands everything you are passing through (for me) has been a relief; (for me) has been the most important support that we’ve had.”
During her moments of sadness or bad news, she admires how John is always there for her no matter the distance. “In those moments, I have always felt that John is close to me.” She says that John always gives her support and the right words to hear at that moment so that she can recover and stand back up again.
