Transcript

Paulina Treviño: My name is Paulina Treviño and I have three kids, Andy, who is ten, Sofia, she’s five, and Tanya, who is eight months old. We are from Mexico.

Andres Treviño: And I am Andres Treviño. I’m 38 years old and originally from Mexico City.

So Andy was born in Mexico City in May 1999, and 48 hours after birth— it was a normal delivery. We were very happy, our first son, and 48 hours after birth he developed a fever, a high fever. His pediatrician told us that he had an infection in his blood from a bacteria. It was a rare infection for a small baby. Six months had gone through and Andy was still in the hospital receiving a lot of antibiotics.

It was this surgeon who told us, “You know what? We’ve done everything we can here in Mexico, so you’re better off looking for help in the U.S.”

We had heard of Children’s Hospital Boston by one of her neighbors, who was actually his cousin, worked here at Children’s Hospital Boston.

So we started meeting some of the researchers, especially the immunologists.

Through specific research he was able to pinpoint the exact genetic mutation that was causing his immune system to fail.

So with that information, knowing what was the root of the problem, having the genetic roots of the disease, we were able to, number one, to maintain him.

Paulina Treviño: Now we felt a little relief also that we knew what it was happening.

Andres Treviño: So the technical name of his disease is he has Nemo, just like the movie Finding Nemo.

It stands for nuclear factor-kappaB essential modulator, and it’s this gene that regulates parts of the immune system. So we knew we had to replace his bone marrow stem cells.

Paulina Treviño: Dr. Orange told us that we could save Andy and at the same time to have another child. So we were very happy about that because we always wanted another child.

Andres Treviño: It was March 14, 2004 when Sofia was born. It was an amazing day. The first moment I heard her cry was the best day of my life, red cheeks, beautiful.

Then we learned that the umbilical cord stem cells that we had gathered were not enough for Andy’s transplant.

So the decision we took, which was also a difficult decision, was to wait six months until Sofia, our daughter, was stronger.

Paulina Treviño: And they could get the bone marrow from her.

Andres Treviño: It was October 2004 when all the family came to the hospital. Andy received ten days of chemotherapy.

Then he received both the umbilical cord stem cells and the bone marrow stem cells from Sofia.

It was a very special moment, obviously, to be able to offer him the chance of receiving these new cells that would allow him to live a normal life.

It took about two years total for us to be able to say that he’s cured and that he’s doing very well.

We’ve seen it working.

What cured my son was the fact that we were able to replace defective cells with new cells that didn’t have a genetic mutation. We believe that stem cell research, we’ll be able to do that for diseases that affect many people worldwide.

We did in vitro fertilization cycles.

We created 26 embryos, and from those 26 embryos two of them were compatible

We had three options with the fertility center. One is do we just keep those cells frozen and just wait, and hopefully medicine will advance and would find a cure for NEMO. The other option was to discard them, but we didn’t want to do that. And the third option was to donate for research.

So we knew about Dr. George Q. Daley and the research being done at Children’s Hospital Boston. So being witness of how our son was cured, we know that with this type of research many will benefit. So we donated those embryos. Around October last year we learned that two embryonic stem cell lines were obtained with those embryos.

Researchers are able to take cells from those lines and apply any type of research that they want to do.

So for example, for medications if they want to try out a new medication they take a sample of the cells, try the medication on the cells and see what effects or benefits it could bring to a patient.

So we think this is only the beginning. A lot more needs to be done. We lived through the transplant process, and again, it’s a very long process to be able to substitute the defective cells with the new ones, but we’re glad something is started.

Dr. George Q. Daley: Andres Treviño, cute little child, has a very rare disease, but fortunately, we’ve been able to make two new stem cell lines from the embryos that the family created in order to cure Andres. This gives us an inexhaustible supply of disease cells. So even though the kids are rare, we now have the tools that we can study forever.

• Learn More

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