Four month old baby girl Enna Lohin is suffering from a potentially life threatening disease. The little girl, who is the pride and joy of her mother, Falher resident Lisa Lohin, was diagnosed with Type 1 Spinal Muscular Atrophy last month. Now residing in the Stollery Childrens’ Hospital in Edmonton, Lisa says that her baby is under constant observation of hospital staff. “I noticed that her crying was different than other babies,” she says. “She wasn’t moving her legs well and she stayed very narrow in the chest.” After multiple doctor visits, Lisa explains that she was sent to Edmonton and blood tests confirmed that her daughter had the rare disease. Some of the symptoms of SMA is difficulty sucking and swallowing, accumulation of secretions in the lungs and throat, poor muscle tone, respiratory infections and difficulty reaching developmental milestones including lifting the head and sitting up. Usually, the earlier the syptoms occur, the shorter the life span. As there is no confirmed treatment short of observing the respiratory tract, children under two years of age usually succomb to the disease. In some cases, there are chances for the child to live to become an adult. SMA is a very rare disease in which only one in 40 people carry the gene. The chance of a baby being diagnosed with the disease is one in 6000. In all of Canada there are only six babies with Type 1 SMA, Enna is the most recent to be diagnosed. “Enna is being fed from a tube in her stomach,” says Lisa. “She is also going through a lot of physiotherapy to try to keep secretions of mucus down.” Type 1 SMA is also known as Werdnig-Hoffmann disease, forming before 6 months of age. Babies diagnosed with type 1 SMA do not usually last past one year of age. Pneumonia is considered the ultimate cause of death due to deterioration of survival motor neurons. These neurons trigger the improper functioning of major bodily organ systems causing pooled secretions inside the lungs. “Clinical trials for SMA treatments have begun but there is very little funding for the disease,” says Lisa. “Although it is a rare disease, our doctors say that the numbers have been increasing.” Lisa explains that the only way to prevent the disorder is for parents to get genetic testing done before they have children to see if they carry the SMA gene.