When the nurse's assistant learned that a hospitalized infant was diagnosed with a deadly blood disease, she could not help but think back to her own treatment for cancer in the very same hospital years ago when she was a teenager.
"I was scared not of dying, but of dying alone," said Nishmeth De Jesus. "I don't want that to happen to him."
His father unknown, and his mother unable to care for her seriously ill child, she surrendered guardianship. De Jesus stepped in to provide a home for the child she calls Angelo.
"We started the adoption process as fast as we could," she recalled, "because the doctors were not sure how long he had."
The adoption was finalized a year ago.
Since shortly after his birth, Angelo has been treated — and so far lived much of his life — at Children's Hospital Los Angeles.
Angelo was formally diagnosed with hemophagocytic lymphohistiocytosis, better known as HLH.
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"With HLH, his immune system does not work properly," said Thomas Hofstra, who specializes in pediatric hematology/oncology at CHLA. During flare-ups, the immune system becomes over-active and attacks the patient's own tissue and organs.
It is treatable, but when it is genetic — as in Angelo's case — it recurs, Hofstra said. Angelo was re-hospitalized last week after having another relapse.
A bone marrow transplant is "the only chance for cure," Hofstra said.
The challenge is to find a donor match. The search usually begins with immediate biological family members, but they have been unreachable, said de Jesus.
The mixed ethnicity of Angelo's parentage is limiting the number of potential matches, according to Hofstra.
Angelo has been a candidate for a transplant, but none of the potential donors tested and registered with the National Marrow Donor Program is a close enough match.
"Without a match, he doesn't have a chance," Nishmeth said.
De Jesus hopes more people will consider contacting the program through its BeTheMatch website, and joining the registry by providing a genetic sample with a simple inner cheek swab.
"Any healthy person can donate blood marrow, or periferal blood, which they can get the stem cells for the bone marrow transplant," said Hofstra. Donors "recover very quickly and they keep living their lives," Hofstra said.
But for those with genetic HLH, with every relapse, recovery is more difficult.
"Every time he [Angelo] gets sick, it's more difficult to treat," said Hofstra. "He's responding partially to treatment now." The doctor said it is crucial to find a transplant match before treatment options dwindle.
De Jesus clings to hope biological relatives of Angelo can be located and evaluated as possible donors. She called him "a fighter."
"But even fighters get tired at some point," De Jesus said.
