“Dad, I’m going to save my brother.”

Pregnant with her second son, Sasoun, in 2017, Armené Kapamajian looked excitedly toward the future. With the holidays coming up, she imagined all the things moms like her would normally do. Her older son, Vaughn, two years old at the time, would have a sibling to play with. There would be winter walks, bundled up tightly, around their neighborhood in Los Angeles. She’d take her children, accompanied by her husband, Dr. Michael Kapamajian, to see their extended family over the holidays.

And when Sasoun was born, Armené and Michael were convinced all that was in the cards.

But about a week later, they were given some life-changing news: Sasoun was diagnosed with a genetic condition called Severe Combined Immunodeficiency Syndrome (SCID), which makes it harder for a person’s immune system to function properly. Even small infections, like ear infections, could be fatal.

The doctors gently explained that Sasoun would need to be isolated from the outside world until his medical team could find a suitable donor and schedule a transplant to rebuild Sasoun’s immune system. So, that’s exactly what they did.

The “New Normal” For The Kapamajians

Armené would be Sasoun’s sole caregiver at the hospital while they waited for a transplant. Michael would still need to work, so while the doctors determined that Michael and older brother Vaughn could not visit the hospital, Armené had to dress head-to-toe in a gown and mask to protect Sasoun. Armené would not be allowed to leave the room for fear of bringing back an infection.

Soon, the reality of this “new normal” began to sink in for Armené. She couldn’t take walks with her family to look at Christmas lights or have friends and family over at the hospital to hold the new little one. She couldn’t even physically touch Vaughn or Michael or do the little things she normally took for granted, like take Christmas pictures as a family.

With their yearly plans shattered, Armené felt lost. Things weren’t supposed to happen this way, right?

The Race For a Match

For SCID, early intervention is critical. Many children don’t ever make it to grade school. The most effective treatment is a bone marrow transplant, where cells from a healthy donor are used to replace the faulty cells and rebuild a functioning immune system. Sasoun’s doctors knew they had to quickly find him a matched donor. It was then that Armené and Michael had a lightbulb moment: after learning that Vaughn was a bone marrow match, they remembered they had also preserved older brother Vaughn’s newborn stem cells with CBR when he was born.

Similar to adult forms of stem cells found in bone marrow, newborn stem cells found in cord blood can be used to rebuild healthy immune systems. Because newborn stem cells are collected at birth, they are younger and more flexible than bone marrow stem cells. This increases the odds of matching and decreases the chances of certain complications. Plus, they are immediately available if and when the family needs them.

Armené and Michael waited nervously while doctors tested whether Vaughn’s stem cells would be compatible with Sasoun. As it turned out, Sasoun was a perfect match for Vaughn’s cord blood.

Vaughn, the 2-year-old pint-sized hero, was ready to help his brother fight.

“Dad,” he said, looking up at his father, “I’m going to save my brother.”

Newborn Stem Cells Were the Key to Saving Sasoun

During the family’s stay at the hospital, CBR sent Vaughn’s stem cells from their cryopreservation lab to Sasoun’s treating physician, and Sasoun was given his transplant. Six weeks after receiving the transplant, the doctors monitoring Sasoun’s progress said it was okay for Sasoun to return home — as long as Sasoun, Vaughn and Armené remained quarantined.

Overjoyed, Armené returned home.  Although the road wasn’t yet clear (she, Sasoun, and Vaughn would remain quarantined for another twelve months), simply being out of the hospital, with Sasoun’s immune system rebuilding — was a huge relief.

A New Beginning

Today, Sasoun lives a much more normal life. Before COVID-19, they could bring Sasoun outdoors, eat dinner at restaurants, and see family. When COVID-19 struck, they were much better equipped to handle isolation. They even offered their “8 Isolation Rules” in a recent article from PopSugar.com to help others deal with social distancing.

As for Michael and Armené, they still marvel at how Vaughn’s newborn stem cells were the “spark plug to jump start Sasoun’s recovery.” At CBR, we were delighted we could make the process of transferring big brother Vaughn’s stem cells super easy.

The Kapamajians remind us of why we’re here: to help as many people as we possibly can get through hard times if and when they arise. We’re so proud to be able to help Sasoun be the little fighter he is and help big brother Vaughn be the hero who helped save him.

6 thoughts on ““Dad, I’m going to save my brother.”

  1. Hello Mr. and Mrs. Kapamajians

    Your fight against SCID have given me hope. I am also looking for option to use my younger child’s stem cell for my older kid’s treatment for CP. I want to understand how did the doctors matched the sibling stem cells and if I may ask which doctor did the treatment. I would like to consult them as well.
    I hope Vaughn and Sasoun are doing well and having fun playing together.

    Thank you.
    M. Bahl

    1. Hi there, Please feel free to reach out to one of our genetic counselors so we can help figure out if there’s an appropriate treatment plan for your child.

  2. Great article I have 2 boys both born with SCID so I could relate to this. It sure wasn’t easy. So nice to hear this story.

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