Enna Lohin

A fund-raiser will be held for local baby, Enna Lohin, who is suffering from a potentially life threatening disease. The five month old little girl, who is the pride and joy of her mother, Falher resident Lisa Lohin, was diagnosed with Type 1 Spinal Muscular Atrophy two months ago. The financial impact of the disease has taken a toll on Lisa and her family. Required equipment will cost well over $10,000, with one machine that would help Enna breathe costing over $6,000. The fund-raiser will occur on Aug. 16 at the Canadian Brewhouse on 11062 156 street in Edmonton. The idea belongs to Stollery Childrens’ Hospital staff Dr. Davies and Dr. Majestic as well as Global news. Initiating the auction is TD employee and friend of the Lohin family Diane Mikkelson. “Businesses from around Canada and the United States are donating items,” says Enna’s grandmother Irene Salberg. “Even the Edmonton Eskimos are donating jerseys to be auctioned off.” Donations of silent auction items to sell would be greatly appreciated. All money raised will be donated to the Enna Lohin Trust Fund at TD Bank and used to pay for expensive equipment, supplies, home care, and travel expenses. In addition to medical expenses, Lisa also has $40,000 of damages to her home in Falher that are not covered by insurance. These damages pose a serious risk to Enna in her precarious state. Lisa cannot afford any of these expenses on her own but desperately wants to ensure that Enna has the best chance at survival. Irene explains that the family is struggling to cope with this de-habilitating disease. “All the family is in rough shape,” says Irene. “There are a lot of worries, we are tired and very exhausted. We are so scared about what could happen in the short future.” Now residing in the Stollery Childrens’ Hospital in Edmonton, Lisa says that Enna 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 symptoms 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 succumb 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 on 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. The family explains that the help of the Stollery hospital in Edmonton and Dr. Butcher from McLennan has been outstanding. If you would like to donate items to the auction or to get more information about it, please phone Diane Mikkelson at 780-443-2756 or email her at bdmikk@telus.net.