Stem cell research: a father's story

Andres Trevino has a very personal take on the NIH’s recent stem cell guidelines. Here, he talks about his son Andy’s rare genetic condition, the daughter whose stem cells saved Andy’s life and the potential stem cells hold for curing other diseases.

Left to right, __, Paulina, Sofia, Andres and Andy Trevino
Left to right, Tania, Paulina, Sofia, Andres and Andy Trevino

My wife is a carrier of a genetic condition that causes the immune system to fail. Ten years ago, we found out the hard way, after the birth of our son, Andy. He had his first life-threatening infection 48 hours after he was born in Mexico City and it took us 19 difficult months to find him a diagnosis.

The name of the disease is NEMO. We found out about NEMO at Children’s Hospital Boston, around 2,280 miles away from our hometown and away from our families; Boston was our last resort. Out of the 20 thousand genes in the human body, researchers at Children’s were able to identify the specific mutation (like finding a misspelled word in the Encyclopedia Britannica) that was causing the deadly problem. Until recently, the last time I checked, there were only about 72 cases registered in the medical journals of children with NEMO, and only half of the cases were alive. Most of them died of infections.

Andy had infections all over his body with different types of bacteria and viruses. He had no tools to fight them. He had infection in his central nervous system, stomach, skin, eyes, blood and elsewhere, even in the bone on his right index finger.

At first, we didn’t know the implications of knowing the roots of the disease, but now we feel fortunate. Knowing about NEMO gave us more options to keep him alive and try to find a cure.

Doctors recommended a bone marrow stem cell transplant to try to replace parts of his immune system and help him fight infections. New bone marrow seemed to be the only way he would be able to reach adulthood. The bone marrow’s NEMO-free stem cells would help him fight infections. The success rate for the procedure greatly depended on the compatibility of the donor, so we searched at public registries worldwide. For two-and-a-half years, we couldn’t find a match.

“There’s always the option of having another baby,” someone told us. We could use the baby’s umbilical cord stem cells for Andy. But we ran the risk of having another baby with NEMO, and on top of that, only one out of four siblings would be compatible with Andy.

We learned about using in vitro fertilization (IVF) to have babies, and pre-implantation genetic diagnosis (PGD) to check compatibility and rule out NEMO. It took us five IVF cycles and 36 embryos to find our daughter, Sofia, and we were blessed with a healthy baby.

Minutes after Sofia’s birth, a doctor gathered umbilical cord blood in a plastic bag that was later sent via courier to a private umbilical cord blood storage location where stem cells were separated and frozen. A couple of weeks later, we learned that the number of stem cells obtained from it were not going to be enough for Andy’s transplant. We were hoping to find a way to increase the numbers of cells without having to take more cells from Sofia. It was a difficult decision, but we knew that bone marrow stem cells are constantly replaced by the body, and we made sure that she would have no side effects. We waited six months until Sofia could donate an additional amount from her bone marrow, and she did fine, thanks to physicians at Children’s.

After almost 1,000 days of hospitalization in Mexico City and Boston, a stem cell bone marrow transplant cured Andy.

My wife and I decided to donate our remaining embryos to the Stem Cell Research Program at Children’s. We knew about the life-changing research done at Children’s and we were hoping that with our cells, researchers could find ways to treat conditions like the one that affected Andy.

After signing at least 10 different consent forms, we transported the embryos from the fertility clinic to the Karp research building at Children’s. We knew some of the researchers there because of the time my son had been in the hospital.

Weeks later, I ran into Paul Lerou, MD, who gave me the news that they were able to obtain two viable stem cell lines from the donated embryos and he invited me to see them. He told me they had one female and one male line, both affected with NEMO.

I didn’t know what to expect. Inside a shallow, circular glass container with a removable cover, I was able to see a group of silver colored cells. It was amazing. Those cells are able to become any other cell of the human body.

I couldn’t help remembering all the feelings we had while we were looking for compatible cells for Andy and how blessed we were with Sofia. Dr. Lerou told me that he didn’t know of any other family with its own stem cell line.

I’m very happy to learn that the National Institutes of Health (NIH) recently released new guidelines for research using human stem cell lines that will allow Dr. Lerou and others to obtain public funding to continue much needed research to find cures.

My only hope is that he’s able to obtain enough funding to be able to obtain stem cells for children with life-threatening diseases who are waiting for compatible cells.

We believe that embryonic stem cell research will revolutionize medicine and provide treatments to many life threatening diseases. It won’t take long until the Stem Cell Research Program at Children’s Hospital Boston is able to unleash the healing power of compatible stem cells for patients who desperately need them. Just as Sofia’s stem cells allowed Andy to fight infections and live a normal life.

  • Maria Creed

    This is an amazing story. Coming from an underdeveloped country myself, I can imagine how difficult it must have been for you at the beginning, not knowing what was happening with Andy.
    It is a blessing that you were able to not only diagnose Andy’s condition, but also to treat him.
    It is always so great to read stories like this one, since my children’s doctors are affiliated with Children’s Hospital Boston and they reinforce my trust and appreciation to every one of them.

  • Art Williams

    Does anyone else see the moral/ethical dilemma of creating and destroying 35 viable human embryos to save 1 human? Even the argument that the two embryonic lines might lead to cures for disease down the road is on shaky ground due to the fact that embryonic stem cell research has yet to produce a single successful treatment. On the other hand, adult stem cells (like those from the umbilical cord blood) don’t require destroying human life and have 70+ successful treatments to their names.

    Each of the other 35 embryos should have been given a chance to be born, a chance to be given a name, a change to be loved. Not destroyed as if they were simply lab rats. There are organizations that would have taken those embryos and attempted to implant them in mothers who couldn’t have children of their own and who would have given them a chance at life. If that one boy’s life was worth creating 36 embryos to save his, then isn’t each of those babys’ life worth giving them a chance to have one instead of being sent off for research.

    One day will will look back on the 19th & 20th century’s holocaust of destroying viable little humans in the same way we look back on Hitler’s holocaust…with sorrow, shame, and a vow: “Never Again”.

    • This response came from Andres Trevino, the father who wrote the post above:

      Mr. Williams,
      Thank you for your comment.

      Yes, many see the moral/ethical dilemma and we did too.

      We decided to share our story because we owe it to our three children, to the people that made Andy’s cure possible and to others who might find hope and who might benefit from similar forms of research. Medicine is about options and I do not feel obliged to believe that the same force that endowed the discovery of medical treatments has intended us to forgo their use. We know that medicine moves forward by sharing and telling these types of stories.

      I’m not a doctor and I’m not a priest, I’m the father of a boy who was born with a hole in his immune system. I live in a practical world of choices and I can speak for families like mine that face life threatening conditions and have to make life changing decisions to find a cure. Our solution relied on finding the genetic roots of the disease and this is what gave us options to cure him.

      In our case most of the embryonic cells (blastocyst) had a well-defined genetic mutation inside a gene known as NEMO that causes the immune system to fail; a terminal condition, not compatible with life.

      When we learned about the procedure that involved in-vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD) as an option to find a compatible sibling to use umbilical cord stem cells to cure our son we found out that:

      a) not many Latinos are registered as stem cell bone marrow donors.

      b) that IVF and PGD don’t always involve pregnancy and that many more embryos are created than will ever become children.

      For Andy’s treatment we needed compatible cells to replace the damaged ones and we faced the moral/ethical dilemma straightforward. We consulted Andy’s doctors and 90% of them thought this procedure could work. We consulted our family and friends, the majority are Catholic, some Jewish and some Atheist and all of them had a positive response. We consulted Padre Toño, a Catholic priest who is a friend of the family. He knew about Andy and what he was going through. He gave us a positive response and also contacted some of his friends at the Vatican who also gave a positive response. My father consulted a Catholic Archbishop in Mexico that said “When caught between two wrongs, choose the lesser one”. We based our decision knowing that the transplant procedure would work and that’s why we came to Children’s Hospital Boston.

      I agree that human embryonic cells are worthy of esteem and respect and shall be handled with dignity and even more than all of the other type of cells inside this planet. I don’t believe that human embryonic cells are like a person. If they are, why haven’t I seen any microscopes inside a church?

      I don’t agree with the premise that the single celled zygote should be given the same considerations as living persons. I do not view the embryo as a human being, particularly when it’s inside a freezer. For me the 36 embryos were a group of cells that as beautiful as they may look (only through the lens of a microscope) are not a baby.

      It’s a blastocyst in an early stage of embryonic development before implantation (picture via Wikipedia). And for me the miracle happens when the blastocyst attaches to the wall of the uterus and performs implantation when connections between the mother and the embryo occur and the different cells begin to form, including the umbilical cord. At this stage the embryo cannot survive outside the mother. Science still can’t explain that moment during implantation and I don’t think it will be able to do so during my lifetime; only God knows what happens.

      We decided to donate the embryos that carried the NEMO disease for research because we know the researchers and we’re hoping that with those cells they will be able to study the disease and find an easier cure. We felt that it was morally justified to derive benefit from embryos through medical research instead of relegating them to medical waste or to donate them to another couple knowing they carried the disease.

      Have you ever had a serious infection? How did you feel? Did it hurt, was it uncomfortable? Multiply those feelings by 1,000, which is the number of days that Andy had to be in the hospital in a constant battle against life threatening infections.

      This has to do with disease and disability and nothing else. I think that in our case love and hope gave us the answer. Not all of the embryos had NEMO and not all of them were donated to research. We have been blessed again with the arrival of another baby who is beautiful and healthy. She was born April 15 and we know she doesn’t have NEMO.

      I don’t think that we can say “never again” or ignore this type of medical science because it will change things, it will push the human race forward. If medical science offers the option to treat disease and relieve suffering, for me it’s deplorable and illicit to block its path, especially when the pain and suffering affects children. Hope is part of the human condition, that thing inside us that insists. In this case as in many more the morally licit solution is to be able to swap healthy cells for damaged ones, to restore health and life and to cure an incurable terminal disease like the one that affected my son. Sick and disabled people deserve the same type of scientific research that cured him. Millions of people with chronic illnesses need hope, belief and desire to the ethical progress of biomedicine.

  • Margey

    Thanks you for sharing not only your very personal story of your son's fight for life but your heart felt letter of response.

  • jazimin gomez

    this was a moiving abd sad story i hooe very thing is alright with ur son.

  • If women isolates the menstrual blood that comes out from the uterus in every month’s cycle has rich stem cells which are the building blocks of life. Stem cells have the capacity to regenerate. This blood rich in menstrual blood helps to produce white blood cells, red blood cells and platelets. The inner cells of the menstrual blood in an embryo which is three to five day old can produce several important organs and specialized tissues like the lungs, skin, eggs, sperms and heart too. It can also help the tissues like muscles, brain and bone marrow.

    The undifferentiated cells which can differentiate into specialized cell types are called stem cells. Stem cells can be broadly divided into two parts, embryo stem cells and adult stem cells. Further, there are majorly three types of stem cells; they are Hematopoietic stem cells, Mesenchymal stem cells and Endothelial stem cells. The stem cell therapies can cure fatal diseases like Parkinson’s diseases, Schizophrenia, Alzheimer’s diseases, Cancer, Spinal Cord injury, diabetes and many more. The therapy is popular in countries like USA, Italy, Germany, Denmark, UAE, Egypt, Russia, Greece and many other countries. Recent researches on oncology and hematology have proved that transplantation of stem cells can cure the diseases. Diseases like cancer, bone marrow is caused as the white blood cell stops to regenerate. The stem cells found in all multi cellular organisms helps to regenerate the cell type. Stem cell transplantation which is abbreviated as SCT is a medical process which helps to save millions of lives. It cures several malignant and non malignant diseases. It has been proved that more than 40,000 Stem cell transplantation which are being performed in a year annually. Stem cells can detect the power of the drugs and assist to detect the effect of the same of humans. Stem cells have proved fatal in the study of abnormal birth.

    There have been debates over the usage of stem cells by few ethical groups. For the sake of mankind and for the development of science the research of stem cells is going on and it is proving fatal for all. These stem cells are used to cure more than 70 types on diseases. Cell therapies are curing the diseases in the best possible way. The best form of stem cells is available in the menstrual blood. Stem cells are remarkable in nature. The main function of the stem cells is that it builds the bridge between the fertilized eggs which original exists and the architecture that we build. The blood cures diseases like leukemia, osteoporosis, spinal cord injury, strokes, burns, metabolic disorder and many more.

    In the case of bone marrow the white blood cells need to be regenerated. Hence the blood rich in stem cells helps to cure the disease. The usage of menstrual blood to cure diseases like bone marrow, leukemia and many more will increase and human science will have much more to give us. Menstrual blood is considered as a waste. But researches have shown that the blood is rich in stem cells.

  • Twinninfinity

    shut up..someones life was saved, yea embryos are dying but celebrate life not death.. before anything can get better there has to be failure.

  • Christi Wilson

    I am writing a persuasive paper for my creative writing class on stem cell research. I am using your story in my paper as a positive step in the research of stem cells and the success it has had. It is a very inspiring story and I am so happy that your family is doing so well. I would like to ask you a few questions if I may please reply here or e mail me @ christicothran@yahoo.com
    thanks so much for the help
    christi wilson

  • Oldman247

    NO!

  • Rickthomas

    🙂

  • Anonymous

    This is truly an epic story. I am happy for your family and your son, Andy. Thank you for sharing such a moving miracle with us.

  • H Nezari

    thank you for sharing your life.

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