Andrés Treviño and his family took Dashing to new heights in Peru at Machu Picchu for Global Genes’ Virtual Denim Dash 5k. The 5k began on April 1st and has been extended to allow dashers to participate through May 15th. Proceeds from the Denim Dash go directly back to the Rare Disease Community through Global Genes’ RARE Patient Impact Grant Program.
Andrés took this opportunity to raise funds and awareness for his son, Andy, who suffers from NEMO, a form of primary immune deficiency. NEMO is a very rare genetic mutation that caused his immune system to fail. His life-threatening infections started just 48 hours after birth with a blood infection, also known as sepsis, brought on by listeria monocitogenes. After multiple life-threatening bacterial, viral and fungal infections, the family was desperate to know more and took Andy to Boston Children’s Hospital. A group of immunologists, lead by Dr. Jordan Orange, was able to pin point the NEMO gene modification that was not allowing Andy to fight infections.
“We moved from Mexico City to Boston trying to find research, resources and better care for my son,” said Treviño.
“My wife and myself like to call our early experience a form of extreme parenting. We had to take care of our son who had to be in the hospital for almost 1,000 days. We learned that seeing your child in pain hurts a lot more than experiencing the pain yourself. [The] doctors at Boston Children’s Hospital allowed us to experience the other side of this empathy; experiencing your child triumphs is better than enjoying your own!”
The family hoped for positive results as Andy went through immunoglobulin therapy. It started to become apparent that Andy would need more than IVIG.
“A very bright research immunologist told us that ‘medicine is always about options’ and having the genetic roots of the disease gave us more options. We were extremely fortunate to find a cure for Andy.”
His sister Sofia Treviño (who Andrés points out is an anagram for “One Fit Savior”) donated her umbilical cord and bone marrow stem cells to replace Andy’s defective cells via a stem cell bone marrow transplant performed at Boston Children’s Hospital in October 2004.
“I still tend to cry when I share our story. We are invited often to talk about our experience and I agree most of the time because I believe we begin to die when we become silent about the things that really matter.”
The Treviño family had been planning a vacation to Machu Picchu—it had always been a dream of theirs and the chance to combine their dream with a good cause made the journey even more magical.
“I’m a fundraiser. We are immigrants from Mexico and we had to do a lot of fundraising to be able to cover my son’s medical treatments. I work for a biopharmaceutical company that focuses in helping people affected by rare diseases with a global presence. I invited my company colleagues to join the Virtual Denim Dash to help us raise awareness about these types of conditions. Global Genes does amazing things for people with rare diseases!”
He has some advice for future Dashers: “Start early! Share your story!”