Baby seeks miracle: Family holds bone marrow drive in Cliffside Park

BY STACEY ROSENFELD
STAFF WRITER
CLIFFSIDE PARK CITIZEN

BERNADETTE MARCINIAK/STAFF PHOTOGRAPHER

Ilyana Martinez swabs the inside of her cheek for a sample to be in the bone marrow registry at the Save Sofia Bone Marrow Registry Drive held at the Cliffside Park Firehouse on May 10. Also pictured is Donna Murtaugh, of Cliffside Park, assisting Martinez.

CLIFFSIDE PARK – Sofia Gonzalez is a precious, four-month-old baby. She is beautiful and strong…and in the fight of her life.

Sofia was born on Dec. 31, 2013, the first child for parents Luz Monica Gonzalez and her husband Francisco Gonzalez. Born four weeks premature after a challenging and complicated pregnancy, the baby was thriving and went home to nearby Ridgefield to begin her life.

Sofia Gonzalez was diagnosed with HLH, a life threatening and extremely rare disease. Her family is desperately seeking a bone marrow match.

The bliss was short-lived, however. On a Wednesday in February, Sofia developed a fever. By Friday, her stomach was markedly distended and she was having difficulty breathing. After being admitted to Hackensack University Medical Center (HUMC), it was determined that the infant had an enlarged spleen. That’s when the tests started.

Within two days, Sofia was diagnosed with HLH, a life threatening and extremely rare disease, her aunt, Sandra Guerrera, of Cliffside Park explained.

“Most pediatricians go an entire career without seeing HLH,” said Guerrera. “We were lucky that Hackensack has seen these cases, and that Sofia was diagnosed within two days. Typically it takes much, much longer to make a diagnosis.”

Sofia immediately began chemotherapy and rounds of steroids to suppress her immune system. As the baby has a genetic form of the disease, a bone marrow transplant is necessary in order to save her life. The former treatments are administered with the hope of extending Sofia’s life until a donor can be found.

“We are in a desperate hunt for a bone marrow match,” said Guerrera. “There is no current match in the national registry.”

On May 10 the family hosted a Marrow Donor Registry Drive at the Cliffside Park Firehouse.

“The event was put together very quickly, in less than a week. I handed out flyers to everyone who would take one and hung banners around town,” the loving aunt said. “Despite the short notice, we still had 40 people get tested and are extremely grateful for the kindness and support of everyone at the firehouse.”

Guerrera explained that typically, someone with similar ancestry makes the best match. This family is Hispanic, with Columbian and Ecuadorian roots.

“Only 10 percent of Hispanics are represented in the national registry,” Guerrera explained. She attributes the under-representation to lack of knowledge and education about what is involved.

“Many people think being a bone marrow donor is akin to donating a kidney. But it nothing like that,” she said.

All that is required to determine a match is a simple cheek swab. Screening may be done privately or through the national registry. If one is screened through the national bone marrow registry, www.bethematch.org, they will be listed in the mass database as a potential match for those in need. Alternatively, one may be tested privately – a cheek swab kit is mailed to them which is returned to a lab via mail – to determine if he or she is a match for a specific individual. Those results, which are determined within two to three weeks, remain private.

Sofia’s family is in the process of being tested. The family is praying for a miracle.

As much as Guerrera prays that a donor is quickly found, she knows the most challenging days lie ahead.

“An actual bone marrow transplant is the toughest part,” she says fighting back tears. “They need to entirely wipe out Sofia’s system. There will be aggressive chemotherapy, periods of isolation, and then waiting, praying and hoping that her tiny body doesn’t reject the transplant.”

Guerrera believes there is a match out there for her niece, and urges anyone willing to be screened. A list of nearby drives can be found at www.bethematch.org or at www.icla.org (promo code teamsavesofia.) Another local bone marrow drive will take place May 17 from 10 a.m. to 1:30 p.m. in nearby Palisades Park at the Lindberg School, 401 Glen Ave.

She also wants people to understand what is really involved in saving a life. After the cheek swab, the potential donor will have an interview and further testing to determine that they are an “able donor.” They will take five days of medication to richen their own blood and then will visit the hospital for a total of three to four hours, when blood will be taken intravenously, processed through a machine, and returned to them intravenously in their other arm.

“There is absolutely no cost to the donor. The biggest outlay is their time…but, that donation of time and love could save the life of my infant niece or someone else.”

For more information, call the Icla da Silva Foundation at 212-593-0474 or email Virginia@icla.org.