Mary Bodzo’s daughter Krista is now 27. Born with spinal muscular atrophy (SMA), her condition is stable, and Bodzo attributes that to the amino acid diet that Krista began at age 5.
“We completely believe that changing her diet was what kept her stable,” Bodzo said in an interview with SMA News Today.
At the age of 8 months, Krista was diagnosed with Type 2 SMA. As she neared her fifth birthday, she was losing her ability to swallow. That’s when Bodzo, a mother of five who lives in Ocala, Florida, decided to try a nutritional approach now known as the amino acid diet.
This diet substitutes milk and soy formulas with a low-fat, elemental, free-form amino acid formula, made from nutrients in their most broken-down form that requires very little digestion.
The diet is not an exact science. Children with SMA seem to react badly to the protein and fat in dairy and soy formulas. But when the protein and fat are replaced with free-form amino acids and reduced fat, they can breathe more easily and have fewer metabolic complications, Bodzo wrote in a description of the diet posted in 2011 on the website Sophia’s Cure.
Children with Type 1, the most severe form of SMA, who begin the diet often see an immediate reduction in airway secretions, she wrote. They are less likely to be constipated, and some actually improve their strength and regain some function.
SMA is caused by a deficiency of the survival motor neuron (SMN) protein, according to the Muscular Dystrophy Association (MDA). In many cases, although not all, it results from mutations of chromosome 5 in the SMN1 gene. The primary symptoms of SMA are weakness of the muscles closest to the body’s core — the shoulders, back, hips and thighs. Muscles controlling breathing and swallowing can also be affected.
Bodzo described SMA as an inherited disease that reduces muscle mass, which prevents proper absorption and storage of amino acids and fat.
The MDA is less certain of dietary benefits, as it states on its website, Medical Management. “Many people wonder if a special diet will affect the course of SMA. … So far, there’s little evidence to suggest that any particular type of diet is useful against SMA — and in fact, some diets may be harmful.”
“For example,” the page continues, “special formulas made up of broken-down protein components called amino acids — so-called ‘elemental diets’ — actually may cause problems for children with SMA who may have little muscle tissue. Some experts say blood levels of these amino acids can become too high if there isn’t enough muscle tissue to properly use them.”
Cure SMA, which posts a document describing the diet and offered by four medical professionals, is neutral toward it. The four end their description with a “strong recommendation” that any dietary plan for a child with SMA be done under the guidance of a registered dietitian or nutritionist.