Kimberly and Thom Price, of Howell, N.J., were more than pleased with a perfect pregnancy and successful c-section on July 14, 2006 when their youngest daughter, Erin, was born. Months after Erin’s birth, Kimberly and Thom’s lives changed forever.
When Erin was 8 months old she was very weak and had difficulty performing oral functions, such as swallowing and sucking. Doctors inserted a feeding tube to assure she received proper nutrition. A muscle biopsy was taken to test for Mitochondrial Disease; the test came back negative. Urinary issues began along with sepsis, seizures and a virus causing doctors to test for various amounts of medical conditions, especially those with seizure activity and global delay. After months of testing, doctors finally diagnosed her.
Erin Price is an extraordinary 7-year-old surviving a very rare condition known as MEF2C deletion. Erin is one of the 7 children in the world diagnosed with this. MEF2C deletion causes intellectual disability such as lack of speech, muscle weakness, poor eye contact and stereotypical movements (such as hand washing). Autistic features and seizures are also present. Doctors originally told the Price’s they did not expect Erin to live very long. However, she’s exceeded their expectations and then some.
In April 2011 Erin was referred to Children's Specialized Hospital. She attended speech therapy to improve her oral function, which would enable her to advance with foods and chewing. Prior to her attendance, Erin had no oral coordination and experienced difficulty eating food from a spoon. Today, Erin can chew potato chips and meat. She even babbles enough to tell you just what kind of chips she’d like!
In addition to speech therapy, Erin also attended physical and occupational therapy at the Toms River location. After a year of sessions with her therapists, Erin and Meagan Davis, Erin reached her parents’ ultimate goal. She sat up by herself for the first time!
“What an amazing sight to suddenly see her head pop up,” said Kimberly Price, Erin’s mother.
Occupational therapist, Erin, worked on strengthening Erin’s core muscles while physical therapist, Meagan, worked on sitting, pulling to stand and walking with the kid walk. During therapy sessions Erin loves using the large grey ball and ladder pull bar to exercise her abilities.
Meagan works closely with Erin to continue mobility progress. Current goals consist of improving Erin’s walking with her gate trainer and practicing how to crawl across the therapy room on her hands and knees.
“The progress she has made in the past year is remarkable,” said Meagan Davis. “We’ve repeatedly increased her goals.”
“We follow Erin’s lead when it comes to goals,” said Kimberly Price. “She continues to amaze all of us with her progress.”
When Erin is not at the Children's Specialized Hospital, she attends Hawkswood School. In addition, she enjoys listening to music with her sisters, Mackenzie, 15, and Morgan, 12. (Erin is a Rihanna fan, but also loves the Gummi Bear song and the duck song!)