Noreen and Lester Jessop knew something was wrong with their son, Daron, when he was only 13 months old. He was developing slower than the other kids his age, and was having a hard time learning to walk. Doctors struggled to diagnose Daron, but when they finally did, it was too late. Six years passed, and Noreen and Lester had welcomed twin girls to the family before doctors finally were able to diagnose the families three children.
The children were diagnosed with a rare life-threatening genetic disorder known as pantothenate kinase-associated neurodegeneration (PKAN). The disorder affects the children's vision, movement, speech, and intellectual functions. Unfortunately, the average lifespan of a child diagnosed with PKAN is only 11 years. There is no cure for PKAN, and currently, there is not even a treatment plan.
At ten years old now, doctors aren’t sure how much longer Daron will have with his family, but his family has not given up on him. Recently, research has come out that may help treat their children and even help them live a long life. Now, the Jessop family is in a desperate race to help the Spoonbill Foundation raise enough money to start a clinical trial, in hopes that Daron’s life can be saved.
This is a horrible story, and we know that sometimes we need a reminder of the good in the world at a time like this, so be sure to check out the video below!