Andy’s Story – The Lifesaving Potential of Sibling Cord Blood | ViaCord

Trevinos KidsMost families see cord blood banking as a valuable opportunity – a chance to preserve stem cells that, if one of their children falls ill in the future, might provide a lifesaving treatment option. Andres and Paulina Treviño are a startling exception: when they banked their daughter Sofia’s cord blood with Viacord, they already planned to use her stem cells to treat and potentially help save her brother Andy from a life-threatening immune disorder.

Rewind five years to when, after Andy was born in Mexico City, a barrage of infections kept him hospitalized for most of his first 16 months. When Andy’s doctors couldn’t understand why, they advised Andres and Paulina to find specialized care. Coincidentally, one of the Treviños’ neighbors had a cousin who worked at Children’s Hospital Boston. They learned the hospital is a a world leader in helping families overcome even the most complicated immune disorders. So they packed their bags and carried Andy thousands of miles away.

In Boston, doctors determined that Andy had a rare mutation in a gene called NEMO.  NEMO mutations can prevent the body from activating genes that play a critical role in immune response and can ultimately cripple the immune system.1 There are only about 15 cases worldwide of this genetic mutation.

While Andy was upbeat despite his rare condition,  – “He loved joking with the nurses and he smiled for X-rays just like he would for a family picture,” Andres recalls –  his prognosis was grim. Typical treatment includes a regimen of antibiotics and immunoglobulin replacement to prevent infections, as well as other therapies. Even then, Andy would still suffer from regular infections and would spend much of his life confined to the hospital. No child with Andy’s condition has lived for more than 20 years. Someday, the infections would win.

Andy’s only hope for a cure was a stem cell transplant, which would build a new, healthy immune system. But first he needed to find a donor to provide a source of healthy stem cells.

Searching for a match
To have the best chance of success, doctors recommended that the Treviños find a perfect match, meaning Andy needed stem cells from someone who had the same genetic makeup but didn’t have the NEMO disorder. The Treviños scoured donor registries but their search was complicated by their ethnicity, which narrowed the donor pool. “The U.S. bone marrow registry had six million people registered, but only 250,000 were Hispanic,” Andres says, “and the registry in Mexico only had 3,000 people.”

After two years of fruitless searching, Andres and Paulina decided to try and give birth to a child who didn’t suffer from Andy’s condition and could donate stem cells to Andy.

The lifesaving potential of sibling cord blood
Sofia was born on a crisp, late winter day 2004. “It was the best day of my life,” Andres recalls. “We were so amazed by her beautiful red cheeks, and when she cried it was the greatest sound I’d ever heard.” Minutes after Sofia’s birth, a doctor collected her umbilical cord blood and it was sent off to ViaCord’s laboratory facility for processing, cryopreservation, and storage.

Six months later, Andy underwent chemotherapy, then received an infusion of stem cells from Sofia’s cord blood and bone marrow. Those cells gradually rebuilt the system that manufactured Andy’s blood, creating new healthy cells that didn’t have the NEMO flaw. Two years later, doctors pronounced him cured.Andy and Sofia

As Andres and Paulina watched Andy regain his strength, they marveled at his special bond with Sofia. “Andy felt they had to be together all the time – even at night, he always wanted her to be in his bedroom,” Andres says. As the kids grew up – Andy is now 12 years old, Sofia is seven – Andres and Paulina explained to them that their bond goes beyond that of most siblings. Today, Andy is a normal, healthy boy. He still has a great sense of humor, he loves to play with his sisters (Paulina had another baby girl!) and he loves soccer – especially the Manchester United team.

While emergency-room trips and stints in the intensive care unit are things of the past, Andres and Paulina will never forget how cord blood banking helped save Andy.

“I think about that every day,” Andres says. “The power of stem cells is what cured my son.”

To learn more about the Treviños amazing journey, check out their blog or read Andy & Sofia, a book that chronicles their life-changing search for Andy’s cure.

 

 

References:
  1. http://www.niaid.nih.gov/topics/immuneDeficiency/Understanding/Pages/nemoMutations.aspx

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