But in many other ways, young Sarah is quite different.
“When she was a year and half old, the doctor told us she didn’t have much time left,” said Mindy Stump, Sarah’s mother. “We were told we’d be lucky if she lived to be 2. We don’t know why, but she’s getting better. I believe it’s because so many people are praying for her.”
Sarah has Mitochondrial Disease, an illness that prevents her body from converting food and oxygen into energy efficiently. The disease also causes seizures, ketotic hypoglycemia, persistent fatigue, developmental delays, severe muscle weakness and gastrointestinal issues. Sarah is also g-tube dependent. “I was told she would never walk, never talk, never be able to show affection,” Mindy said. “I really want to find that doctor now and have him ride in a car with her for 2 hours to Riley’s Children’s Hospital and hear her now.”
By 6 p.m. most evenings, Mindy said her daughter is asking to go to bed. “She sleeps 20 hours a day. If we go somewhere she’s begging to take a nap.” Mindy added, “People just look at me and are like, ‘Where did you get that child?'”
At preschool, where she attends at Sacred Heart Catholic School, Sarah can easily sleep through class. “Because she’s so young, she doesn’t know how to conserve her energy. If you or I know we have something to do at night, we can take a nap or rest to prepare for it,” explained Mindy, “but she doesn’t get that. As she gets older she’ll understand.”
The severe fatigue, however, is just one of many issues Sarah has to contend with. “She has seizures, and because Mitochondrial Disease affects the whole brain, she could have a grand-mal seizure, a clonic or tonic or absence seizure … ”
Unfortunately, there is no cure for Mitochondrial Disease and Sarah must take a barrage of 5 medications multiple times a day. In her young life, she’s already underwent several hospitalizations and surgeries and Mindy said her 9 p.m. to 6 a.m. g-tube that feeds her body formula to make up for her body’s excessive need for calories will be something she has to have for the rest of her life.
“She has good days and bad days,” said Mindy. “On her bad days, she has a wheelchair and she also has leg braces.” At school, Sarah uses a special chair to help her sit up. Her muscle weakness makes it difficult for her to sit up for any extended period.
During this week, which is National Mitochondrial Disease Awareness Week, Sarah and her family and friends are continuing their efforts to raise awareness of the disease and money for its research. At this point, there is no cure for Mitochondrial Disease, which claims the lives of more children than cancer and muscular dystrophy combined.During morning and noon recesses Tuesday, Sept. 18, popsicles will be sold at Sacred Heart Catholic School to raise money for the United Mitochondrial Disease Foundation. Sarah’s family also maintains a Facebook pagewhere they sell T-shirts and bracelets and give all of the money to UMDF in Sarah’s name.
In the spring, the family – and Sarah, too – will take part in a walk also meant to raise funds for research. They welcome any donations, all of which go to the United Mitochondrial Disease Foundation.
To find out how to donate or buy a T-shirt or bracelet to help find a cure for Sarah’s disease, contact Sarah’s sMILES.