Fifteen years ago today, at the Six West transplantation unit at Boston Children’s Hospital Andy received the lifesaving blood stem cells from his sister Sofia to find a cure for NEMO, a rare terminal type of primary immune deficiency. The solution was simple, the process was not. For the last 180 months, circulating around their body, and for the rest of their lives, Andy & Sofia share the same type of blood cells, exactly the same cells that are keeping them safe, keeping them alive.
It took us almost 1,000 hospital days and nights in two different countries, who speak different languages, to find this solution which was to be found with them and in them. It was simply a part of them, they provided the solution, they made this possible. This was elegant and equal, Andy allowed us to find Sofia and Sofia allowed a cure for Andy. In addition, Andy’s good sense of humor, his resiliency, strength, perseverance and patience; abundant patience made this possible. Sofia with her stem cells, obviously; a naive contribution that turned out to be of a lesser importance than her contagious energy and positive spirit that lifted us all upon arrival and continues to elevate us and others.
Andy & Sofia inspired Paulina and I to keep it together, to immigrate from Mexico to the U S and later become U S Citizens. They inspired doctors, nurses and researchers to keep Andy alive and to find solutions that medicine had never tested before. They inspired Paulina and I to donate our stem cells for research and new discoveries of blood cell formation have been made possible. They inspired me to write a book about our journey (“Andy & Sofia, stem cells scientific miracles and one fit savior” by Andres Treviño with Kate Kruschwitz). They inspired Paulina to become a nurse to continue helping others. They inspired me to become an advocate for those who experience rare and difficult diseases. Their story inspired the creation of the “Milagros para Niños” philanthropic initiative at Boston Children’s Hospital that has raised more than $10M for Latino kids. If you visit the Patient Entertainment Center at Boston Children’s Hospital you will find a computer highlighting ten patients stories of the last 150 year history of the hospital. The story of Andy & Sofia is one of them.
My wife and I have had the opportunity to share their story with Nobel Prize Laureates, Scientists, Philanthropists, Presidents, Religious Leaders, Educators and Students. We met Obama at the White House (thank you Children’s Miracle Network) and Mickey gave us unlimited rides at Disney (thank you Make a Wish Foundation).
There have been some who cry and feel inspired by the story. Others respond saying, on camera that what we did “goes against nature because it was man orchestrating the flow of human life… “ and they were wrong. They were also those that told us directly from the Vatican that the most important principle of a family is to protect life…, and they were right.
The most beautiful aspect of it all is that if you ask them “What do you remember?” They will look at each other, then turn back to you, raise their shoulders and respond “nothing”. And that’s the way it should be. A victory for extreme parenting! This response was evident during the filming of the “Do Something!” documentary from the Jeffrey Modell Foundation, the Director was not as happy as Paulina and I were when we heard that answer.
Today, medicine has tools (gene therapy, CRISPR) that would undoubtedly allow easier and more rapid cures for NEMO and similar rare and not so rare conditions. However, the impossible thing has happened, sadly we have gone backwards, parents of kids with NEMO, in a similar situation find it more difficult today to find a cure than what it took us 5,478 days ago. It is greed vs. philanthropy, stereotypes vs. knowledge. It is those who create distractions that lead with hate and fear instead of hope and inspiration who are creating barriers and walls to the faster cures.
Andy and Sofia taught us that hope is that thing in us that insists! Let’s continue to find options, let’s not become silent about the things that matter.
Andy and Sofia and all the other kids and adults with difficult and rare health conditions continue to inspire us.
A happy 15th. second birthday for Andy now that he’s 20!
