The Moscow Mills Lion’s Club will be hosting a trivia night at 5 p.m. on Aug. 3 with all the proceeds going to two-year-old Maddox Hatfield and his family to pay for medical expenses for Maddox’ rare health issues.
“It kind of all started last year when we were referred to a genetic specialist that wanted us to get genetic testing and our insurance wouldn’t cover it,” Maddox’ mother Alesia Hatfield said.
After that, Maddox began undergoing therapy at home. But when Maddox was found unresponsive in his crib and rushed to the hospital, it was clear that further steps needed to be taken to ensure his health and safety. After spending four days in St. Louis Children’s Hospital, it was discovered that Maddox had epilepsy.
“While he was in there, they did the genetic testing because they got it covered by the insurance and it was found out that he had a rare genetic disease called CNKSR2,” Alesia said.
She explained how CNKSR2, which comes from the X chromosome, can lead to complications including epilepsy, autism, cerebral palsy and Attention Deficit/Hyperactivity Disorder (ADHD).
Alesia also described CNKSR2 in practical terms, saying, “When they look at genetics, they look at it like a recipe book. You’ve got certain ingredients for certain recipes. Say you were making a batch of chocolate chip cookies and one word was misspelled out of that recipe.
“It’s so rare, that they know of, that only six to seven cases have been reported across the entire United States,” Alesia said.
On top of the CNKSR2 issue, Maddox was recently diagnosed with Autism and Cerebral Palsy, which doctors think is related to the CNKSR2 issue.
Maddox receives speech, physical and occupational therapy.
“The biggest thing right now is they are trying to get him talking and walking,” Alesia said.
Alesia recently had to quit her job as a medical assistant to take care of Maddox full time.
“He’s the happiest, most outgoing little boy you’d ever meet,” Alesia said.
Tickets to the trivia night are $25 a person or $200 for a table of eight and all the proceeds go straight to Maddox’ medical bills.