A child in mid-Missouri’s Centralia is one of about 1,000 people worldwide diagnosed with Fox P1, a rare genetic disorder.
The child’s mother is organizing a 5K and fun run in the Anchor City this month. Mother Lindy Henke says her five-year-old daughter Marley was diagnosed in December. She tells 939 the Eagle that every dollar helps:
“And all of the funds raised for this are going directly to the Fox P1 Foundation, which is the organization that helps raise money for research for the Fox P1 syndrome,” Ms. Henke says.
The 5K and fun run will take place on Saturday September 19 on Centralia’s city square. Registration begins at 7:30 am, with the 5K starting at 8:30 and the fun run at 9 am.
Lindy Henke tells 939 the Eagle that her five-year-old daughter Marley is disabled and severely impaired in speech:
“It is characterized by … there’s delays in early motor and language milestones. She anywhere from mild to severe intellectual deficits. And then speech and language impairment and behavior abnormalities,” says Henke.
She says her daughter’s speech is improving and describes her as a wonderful girl.
Lindy Henke says there will be fun for the entire family at the event and says 100 percent of registration fees and proceeds will be donated to the Fox P1 Foundation to promote ongoing research efforts.