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Florida mom donates stem cells to cure 7-year-old sons of sickle cell disease

Orlando Sentinel - 5/9/2022

When doctors told Marelyn Salgado she could donate stem cells from her bone marrow to her twin boys, she knew she had to do it.

“I didn’t want to see them sick anymore. Always sick, always sick. I didn’t have the time to [have] a normal life,” Salgado said.

For seven long years, Salgado has watched her children, Aaron and Ryan Salgado, suffer from severe sickle cell disease, a genetic disorder present from birth that deforms red blood cells, the cells responsible for carrying oxygen to all parts of the body.

Sickle cell disease affects about 100,000 Americans, according to the Centers for Disease Control and Prevention, primarily people with ancestors from sub-Saharan Africa, but Latinx people, such as the Salgado family, can also get it.

The only known cure is to destroy a person’s unhealthy red blood cells, then replace them with healthy stem cells, special cells created in bone marrow that can develop into red blood cells. The procedure has a 95% survival rate in children with sickle cell disease, according to the American Society of Hematology. The procedure is done only in extreme cases because of the potential for long-term complications or even death.

Salgado found out she was able to donate her bone marrow three years ago, but the pandemic delayed the procedure. Then, one of her sons almost died. She said the kids’ hematologist — a doctor specializing in blood disorders — called AdventHealth for Children. Staff reached out to Salgado and said the time had come, if she was willing.

Salgado decided to give herself an early Mother’s Day gift.

“I was nervous. I prayed a lot, because that gave me comfort. So I felt peace. And then I said, ‘this is the time,’” she said.

In early March, Salgado and her boys traveled from Palm Beach Gardens to Orlando for the procedure. About two months later, the boys are on the mend and staying with Salgado at a Ronald McDonald House next to the hospital so they can attend follow-up appointments.

Salgado said the boys are focused on taking it easy and healing for now — they’re dealing with symptoms such as nausea and discomfort from the procedure — but when they recover, the future will be a far cry from their previous life.

Even holding down a job used to be impossible because of Ryan and Aaron’s frequent stays in the hospital, Salgado said. They were in near-constant pain as their deformed red blood cells got stuck in small blood vessels and clogged blood flow, which can also cause strokes. Bouts of repeated illness kept them from regularly attending school.

“I have to start now from zero with normal life with them,” Salgado said. “Everything is going to be different.”

Dr. Susan Kelly, medical director for pediatric cellular therapy at AdventHealth for Children, led the transplant effort. AdventHealth for Children has done 146 transplants since 2016.

In an interview provided by AdventHealth, Kelly said Salgado may not have been able to save her children just a few years ago.

Though stem cell donation has been around for decades, it could previously only be done on people with closely genetically matched tissues, leaving many without donors, Kelly said. Recent innovations in health technology have allowed a parent — who shares only half their genes with their children — to donate half-matched stem cells, Kelly explained.

Right now, there aren’t many programs in the Southeast offering this type of transplant. Kelly hopes the procedure becomes more popular in future years.

“That is scary, to think about going through a transplant, but when you look at what you’re being offered, I would seriously recommend anyone who can to consider it as an option,” she said. “We have the ability to offer them the potential of having a life without sickle cell disease, which is really miraculous for those children.”

Salgado recommends bone marrow transplantation “100%.” To other single moms of children struggling with chronic diseases, she shares a message of hope.

“Just keep praying and trusting,” she said. “There is always a way.”

ccatherman@orlandosentinel.com; @CECatherman on Twitter

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