Lauren's Story

Images captured by Haley Lorraine Photography

Meet Tiny Light Lauren.  Lauren is sweet and loving, and like most toddlers, she is stubborn!  Lauren has Pyrodoxine Dependent Epilepsy, a rare metabolic disorder that has only been diagnosed in 100 people around the world since 1954.

Lauren’s seizures do not stop unless she is sedated.  This can mean that she can experience seizures that last up to 12 hours at a time or longer.  Lauren waited for her diagnosis for two months in the NICU and PICU, sedated almost the entire time.  This was an extremely uncertain and scary time for her parents, and to make it worse, there was not a lot of information to be found on Lauren’s condition.  In addition, Lauren has been the only person diagnosed with this very rare condition at birth.

Lauren is now off of the many seizure medications that she had been forced to take to control her condition; all she currently takes is B6.  She is slightly developmentally delayed, but her parents are happy to see that she is happy. They are confident that she will be walking soon, and she is on a special diet to help her developmentally.

Lauren’s parents are sure that Lauren's stubborn nature has helped her to become seizure free for two years!  To other parents facing similar diagnoses with their children, Lauren’s parents promise that they are not alone!  It may be a rare condition, but there are others out there going through the same experience.  “These kids can do what they want - it just takes them a little longer to get there.”  Because Lauren’s condition is rare, her future is unknown.  Her parents have one wish for Lauren in the future: that she be able to follow any path that she may choose - in good health!