SMA means more than letters for Wahluke family

WAHLUKE - News media reminds us constantly about national days/weeks/months of health observances. The average person might listen momentarily but doesn't really pay much attention unless it affects them.

August is National Spinal Muscular Atrophy (SMA) month.

The initials SMA (Spinal Muscular Atrophy) have special meaning for Nieves and Valerie Gomez. Nieves is a Columbia Basin Health Association (CBHA) Clinic Manager; Valerie is a CBHA Dental Hygienist. Their little son, Liam Taylor Gomez was born Aug. 31, 2012. He achieved all the normal benchmarks along the way; he was active and engaged with everyone around him.

"After several months Valerie and I noticed that Liam wasn't moving as much as he had been; he still was happy and eating well but his movements were definitely lessening," Nieves recalls.

A visit to their family physician at CBHA, Dr. Michelle Ang, confirmed their fears that something was wrong with their beautiful baby.

"Liam was immediately referred to a specialist in Seattle. The diagnosis was SMA," he said. "We learned that SMA is the most common cause of infant death. SMA Types I, II, and III belong to a group of hereditary diseases that cause weakness and deterioration of the voluntary muscles in the arms and legs of infants and children. The disorders are caused by an abnormal or missing gene known as the survival motor neuron gene I (SMNI), which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die."

In order for a child to be affected by SMA, both parents usually are carriers of the abnormal gene and pass this gene on to their child.

When both parents are carriers, the possibility of a child inheriting the disorder is 1 in 4, or 25%, with each pregnancy.

"We were totally unaware that we each carried the gene," Nieves said. One in 6,000 babies is born with SMA in the US.

Little Liam's cognitive abilities increased as his physical abilities decreased. There is no cure for SMA. Organizations, doctors, and researchers are aggressively working toward finding a cure and/or way to prolong the quality of life for a SMA infant. Liam died March 9, 2013.

"August is a difficult month for us because August 31st would have been his 1st birthday," Nieves said.

Nieves and Valerie's goal as parents is to continue to honor Liam's short lived life by organizing a SMA Awareness event similar to Relay for Life where funds will be raised to send to FSMA Foundation for research and family support.

"We also intend to gift a donation to our local church to help families suffering the loss of an infant, as well as start a scholarship foundation for students interested in a health care career," Nieves said.

In addition, they will be participating in a hot air balloon ride over Seattle in memory of their "golden angel" on his birth date.