By Ivan Pereira
A Jamaica toddler who suffers from a rare medical condition is getting some help after the federal government gave his parents special approval to use European medicine.
Sandra and Juan Gomez said they were worried their 2-year old son, Jayden, would have to suffer as he grew up because of the constant seizures he has had to deal with due to non-ketotic hyperglycinemia, a rare metabolic disorder.
But after bringing their problem to U.S. Rep. Gregory Meeks (D-Jamaica), who went to the U.S. Food and Drug Administration for help, the couple can now give their son a formula that will combat the condition.
“Juan and I tried so hard, we were desperate to find a solution because we did not want to give up on our son,” Sandra Gomez said at a news conference at the congressman’s office March 29.
Jayden’s condition makes his body unable to break down amino acids, which over time leads to serious internal problems, according to Dr. Martin Bialer, chief of the Division of Genetics at the Steven and Alexandra Cohen Children’s Hospital.
“The amino acids then build up in his body and cause damage to his organs, especially his brain,” he said in a statement.
The boy was diagnosed with the condition at 2 weeks old and has not gained weight in several months since he cannot eat certain foods. Jayden was also hospitalized in January for diarrhea and dehydration.
Although there are formulas available in the United States to treat metabolic conditions, Meeks said those medicines contained the same amino acid that hurt Jayden. After hearing the Gomezes’ story, he went to the FDA to request a “compassionate” order to allow the family to import XGLY Analog, a formula manufactured in Europe.
“Jayden’s doctors determined that this formula, which is not available in the United States, could provide the necessary supplementary nutrients so that Jayden can gain weight and develop both physically and neurologically,” the congressman said in a statement.
Sandra Gomez said her son cannot walk or talk, but said she was confident the formula would help him to catch up and grow.
“I am so happy that the U.S. FDA will allow the formula into the country,” she said.
Reach reporter Ivan Pereira by e-mail at ipereira@cnglocal.com or by phone at 718-260-4546.
