Sidney Girl Battling Mitochondrial Disease; Walk, Fundraiser Planned At Hacienda
Sidney Girl Battling Mitochondrial Disease; Walk, Fundraiser Planned At Hacienda
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Jennifer Peryam-jperyam@timesuniononline.com
Sidney Girl Battling Mitochondrial Disease; Walk, Fundraiser Planned At HaciendaSIDNEY- Sarah Landrigan, like most 2-year-old girls, likes Dora the Explorer and playing outside. The unique thing about Landrigan is that her energy level is a commodity as she battles with mitochondrial disease. Landrigan’s body does not produce energy the way it should. Her cells do not convert food and oxygen into energy efficiently. Landrigan’s body requires more sleep than average just to keep up. She also takes a supplement to help her body utilize the energy it does have. Her diagnoses include ketotic hypoglycemia, a seizure disorder that causes developmental delays, severe muscle weakness, chronic fatigue, and abnormal respirometry- all of which are symptoms of Mitochondrial Disease. Landrigan and her family have formed a team called Sarah’s sMILES and will walk April 30 in the Energy For Life Walkathon, sponsored by the Indiana Chapter of the United Mitochondrial Disease Foundation, in Indianapolis. A fundraiser will be at Hacienda in Warsaw on Tuesday from 11 a.m. to 10 p.m. where 20 percent of proceeds will go toward Landrigan’s walk team. People are required to get tickets for the fundraiser at Elder-Beerman and Courthouse Coffee on Frontage Road, Warsaw. The Landrigan family’s quest for answers began when she was born three weeks early. She went to the natal intensive care unit after birth because she wouldn't eat. The doctors had a couldn’t get her to drink from a bottle. Even at 6-months old, she weighed only eight pounds. She would vomit after every feeding, and it would take an hour and a half for her to drink one ounce, her mother Melinda said. That was the point when the Landrigan’s family doctor referred them to a pediatrician. Genetic testing was done on Landrigan. No conclusive results were found genetically- they eventually gave her a Russell-Silver syndrome diagnosis, which is a form of dwarfism, because of her small statue and failure to thrive. She was seen by a few different geneticists at Peyton Manning Children's Hospital and Riley Hospital For Children, and it wasn't until she started having seizures last May that mitochondrial disease was mentioned and doctors realized that Russell-Silver syndrome was not what Sarah has. A couple of weeks later, she was admitted to Riley for 24-hour observation by her endocrinologist. She had been having low blood sugar levels. At that point, they were able to determine that Sarah has Ketotic hypoglycemia, and they were able to stop the damage to her liver by making changes to her diet.
