When Keith Jones was just 2 weeks old, he was admitted to SSM Cardinal Glennon Children’s Medical Center.  He did not return home until he was nearing his first birthday.  His diagnosis:  a rare immunodeficiency caused by a mutation on the NF-kappa-B essential modulator gene called NEMO for short.  He also had been diagnosed with ectodermal dysplasia, a disorder that causes abnormal growth of the skin, hair and teeth.  “Since the disease is so rare, almost nobody has it or knows what to do with it,” says his mother Letecia Jones. “His treatment has been trial and error.” Some of the medical staff have been on his team from the very beginning. Mary Santen has been his primary nurse since the first visit – earning her the fond nickname “Mommy No. 2” Even with his complicated terminology and treatment plan, Keith is always kept informed.  “He’s like a 13-year-old in a 7-year-old’s body,” his mom says.  “We’re straightforward about what’s going on, so he knows what to expect and can prepare.”
 
Now, Keith has good days and bad days.  His frequent hospital stays ,which can last weeks or even months, help him put on weight and fight infections his body can’t.  In 2011, he was in the hospital from March until August. When he is home, he watches football and basketball on television – but his favorite thing to do is play with his baby sister 4-year-old Keira.  Previously a student at Lucas Crossing Elementary School, Keith is now homeschooled by his mother. She describes him as a smart, funny, charming boy who loves to entertain and talk to people. “He never stops dancing,” Letecia says.  No matter where we are or what we are doing, he’s tapping his feet or bobbing his head.” And his favorite artist? Pop legend Michael Jackson.  But don’t ask about his favorite song: “I love them all!” Keith says.
 
Article Courtesy of Town & Style
Photo Courtesy of Strauss Peyton Photography