EL PASO — Two-year-old Emmanuel Gonzalez felt the sun on his face for the first time in weeks Sunday.
He has a rare immune system disorder and had to stay in his room at Providence Memorial Hospital while he got well enough to make his first trip down to the grassy area in front of the hospital.
“He likes to be outside looking for butterflies,” said his mother, Maria Gonzalez. “He wants to be outside. He doesn’t want to be in here.”
Emmanuel has hemophagocytic lymphohistiocytosis, or HLH, a rare immune system disorder that caused him to experience high fevers, painful sores, mood swings and body aches.
After several doctors in his hometown of Lubbock failed to make a diagnosis, his family traveled to Juárez, where a friend who is a doctor helped find the cause of his symptoms.
Gonzalez said she came to El Paso to receive treatment for her son so the family’s health insurance plan could help pay his medical costs.
He checked into Providence, and soon the fever that Emmanuel had for weeks dissipated and his sores began to heal.
He started receiving chemotherapy treatments last week and soon will know for certain whether a bone-marrow transplant could help him recover.
Dr. Benjamin Carcamo, Emmanuel’s pediatric oncologist, said the condition occurs in about one in 1 million children. He said HLH occurs when histiocytes, which are part of the immune system, begin functioning improperly.
“For some reason, they start working harder than they are supposed to and they start attacking the body, causing high fever, enlarged liver and spleen and enlarged lymph nodes and a rash,” he said. “It’s basically your immune system fighting against itself.”
He said survival rates are 50 percent with aggressive therapies.
Carcamo said he suspects Emmanuel’s HLH will be genetic and will require the bone-marrow transplant to essentially replace the boy’s immune system. He said the survival rate is 50 percent to 70 percent for those who receive the transplant.
The Gonzalez family is afraid that young Emmanuel will have a rough road ahead when his need for a bone-marrow transplant is confirmed.
Anita Gonzalez, spokeswoman for the National Marrow Donor Program and no relation to Emmanuel, said the need for donors in El Paso is critical.
She said Emmanuel and about 20 other children in El Paso are looking for bone-marrow donor matches. Also on the list are 34 adults.
All are Hispanic.
“Only a Hispanic can donate to another Hispanic,” said Andrew Soliz, a recruiter for the National Marrow Donor Program and Emmanuel’s godfather. “With only 8 percent (of the registry being Hispanic) around the world, we don’t have as good an opportunity to find a match as Anglo-Saxons.
“In two days they can find a donor, and with us it can take weeks or months. There’s a little boy who’s been on the registry for four years because we haven’t been able to find him a match.”
Emmanuel’s 5-year-old sister is not a match for him. Neither are his parents or other family members who have been tested.
To help the chances for Emmanuel and others in the area, the National Marrow Donor Program wants more people to register as marrow donors. The process requires only a simple swab of saliva.
Emmanuel’s dad pushed him around the hospital Tuesday in a little blue car, its trunk stocked with a baby bottle and a bag of Funyuns snacks — the boy’s favorite.
Emmanuel is scarred by the painful sores that once covered most of his body, but his eyes smiled from above the surgical mask he was required to wear for his zip around the Children’s Hospital at Providence.
He whimpered and cried when he was again taken from the sunny outdoors and wheeled back to his room.
Emmanuel’s mother said he doesn’t really understand what’s happening to him, but she tries her best to show him love and attention during his ordeal. “He feels scared and he wants us to be by his side,” she said. “It’s anguish.”
Erica Molina Johnson may be reached at [email protected]; 546-6132.
To help
- What: The National Marrow Donor Program will have a drive to register new bone-marrow donors.
- When:”8 a.m. to 2 p.m. June 28.
- Where: St. Frances Xavier Cabrini Catholic Church, 12200 Vista Del Sol.
- Information:”532-1262.
- To register online visit http://join.marrow.org or www.bethematch.org.