Voice of patients rings out loud at stem cell conference

 Tania, Paulina, Sofia, Andres and Andy Trevino (photo: Children’s Hospital Boston)

A conference like the annual meeting of the International Society for Stem Cell Research (ISSCR)  is always going to be heavy with science and dense with technical language and complex power point slides. But the voices of those who are in need of the cures that scientists are searching for has not been lost.

Andres Trevino is one of those. In beginning his talk he said:

I’m not a physician or a scientist or a politician. I’m not a priest. I’m here as a dad. I’ve been a dad for 5,143 days.

Andres counts each day because for him each day is a gift. His son Andy was born with a life threatening disease, a mutation in a single gene called NEMO that caused his immune system to malfunction, making him vulnerable to a series of potentially deadly infections.

Andres and his wife called it “extreme parenthood”. That may be an understatement. Andy’s condition meant he spent more than 1,000 days in the hospital in his first five years of life; it meant he had to undergo more than 30 operations, and be cared for by more than 150 doctors and 450 nurses.

After being told by doctor’s in Mexico, where they lived, that Andy just had “bad luck” and that there was nothing they could do, the family took Andy to Boston Children’s hospital. They were told there were three options; a regular regimen of strong antibiotics and antifungals; a gene therapy (but this wasn’t viable at the time); or a stem cell bone marrow transplant.

They went for option number 3 but a search for a compatible donor proved elusive so they took the step that landed them on the front pages of newspapers and the headlines on TV. They decided to have a daughter, through IVF, who would be a source of the stem cells that Andy needed to survive.

It proved a controversial decision with some groups criticizing the family, and others – including the Vatican according to Andres – saying the family faced two bad choices and took the least of them.

Long story short, daughter Sophia provided blood stem cells for a transplant with umbilical and marrow cells infused one after the other one. Today Andy is healthy, strong and has a full life ahead of him.

The family donated the unused embryos from their IVF treatment to research, so that scientists could better understand the genetic mutation that Andy has and come up with ways to help others with the condition.

At CIRM we know how important it is to engage patients and patient advocates in everything we do (see our Stories of Hope page). Their voices, their stories, are a constant reminder why we do the work we do, to find treatments and cures for diseases and conditions that are currently incurable. At ISSCR, Andres’ voice rang out clear and strong, reminding everyone that even the best research is just a means to an end, and that end is saving lives.

Andres says; “seeing your child in pain hurts a lot more than being in pain yourself.” He says his daughter’s name, Sophia Trevino, is an anagram for One Fit Saviour. He says it’s a beautiful name. And an appropriate one.

KM

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