Fundraiser Jan. 31 for 3-Year-Old with Mitochondrial Disease
Posted
Jennifer Peryam-jperyam@timesuniononline.com
Sarah Landrigan, like most 3-year-old girls, likes Dora the Explorer and playing outside.
The unique thing about Landrigan, who is a preschool student at Sacred Heart School, is that her energy level is a commodity as she battles with mitochondrial disease.
Landrigan is the daughter of Jake and Melinda Landrigan, and the sister of Hannah, 4.
A fundraiser will be at Hacienda, 3805 Lake City Highway, Warsaw, on Jan. 31 from 11 a.m. to 10 p.m. where 20 percent of proceeds will go toward Landrigan’s walk team, Sarah’s sMILES.
Landrigan and her family formed a team called Sarah’s sMILES and walked last April in the Energy For Life Walkathon, sponsored by the Indiana Chapter of the United Mitochondrial Disease Foundation, in Indianapolis.
This is the Second Annual Energy for Life Walk in Indianapolis and the second year Sarah's sMILES is participating.
Last year, Landrigan’s team, consisting of friends and family from Indiana and Ohio, had more than 30 participants. This year’s walk is April 28.
All money will be sent to the United Mitochondrial Disease Foundation, and will be used for research to find a cure for mitochondrial disease.
Tokens for the fundraiser at Hacienda are free and can be picked up at many locations, including the Pierceton American Legion, RR Donnelley & Sons, Sacred Heart Elementary School, Maxx Tan and Courthouse Coffee.
Last year during the Hacienda Gives Back Fiesta, more than $700 was raised to go to Landrigan’s walk team.
The Landrigans did a Pizza Hut Buffet night fundraiser on Dec. 12 and raised $428 for the United Mitochondrial Disease Foundation.
Last year, Sarah’s sMILES team raised $5,000, and this year’s goal is $10,000 for the United Mitochondrial Disease Foundation.
Landrigan will have surgery today at Riley Hospital for Children where she will have her tonsils and adenoids removed.
She also will have a small portion of her vocal cords trimmed.
In October, Landrigan underwent a sleep study at Riley Hospital. The result showed severe sleep apnea and an underlying respiratory abnormality, as well as low blood oxygen levels while she sleeps, according to her mother, Melinda.
Landrigan also was diagnosed with nocturnal asthma, which only affects her during sleep. The surgery recovery for the asthma is expected to be about two weeks. If there are no complications, Landrigan will only stay a day and a half at Riley.
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.
Landrigan has had six surgeries, not including the three separate procedures that will be done this week.
She had a tube placed in her stomach in February 2009 to help with her eating, granulation tissue removed from her feeding tube site in 2010, a skin biopsy in January and May 2011, a muscle biopsy in 2011 and tubes placed in her ears in 2011.
Her diagnoses includes 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.
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.
Even at 6 months old, she weighed only 8 pounds. She would vomit after every feeding, and it would take an hour and a half for her to drink 1 ounce, Melinda said.
That was the point when the Landrigan’s family doctor referred them to a pediatrician.
Genetic testing was done.
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 Landrigan has Ketotic hypoglycemia, and they were able to stop the damage to her liver by making changes to her diet.
For more information about Landrigan, visit www.facebook.com/sarahjeanlandrigan or www.caringbridge.org/visit/sarahlandrigan
