To celebrate the Heroes that care for children afflicted with neurologic disease, the CNF will be hosting A Heroes Dinner on Saturday, November 8, 2014 at The Four Seasons – Beverly Hills. This evening reception will announce the establishment of the John & Laurian Scott – Heroes of Promise Award. It is an award that begs us to not only honor the promise they made to their late children, but to also make one to ourselves. A promise to show up when the unthinkable happens. A promise to be the Hero that lingers within. A promise to say never again. After all, our children deserve to see Heroes every day.
We’ve come to think of Heroes as imaginary creatures, somehow separate from our daily reality. Yet our humanity beckons us to believe we can battle against the unjust problems of today and win. In essence, we beg for the arrival of Heroes.
Since 2001, the Child Neurology Foundation (CNF) has been working to ensure children living with neurologic disorders receive optimal care. One-in-four children in the United States lives with a neurologic disease – ranging from Autism and Epilepsy to rare neuromuscular diagnoses. These 18 million affected children, and their families, are asked daily to be their own Heroes; and, in doing so, they have become ours.
John and Laurian Scott know the reality of caring for a child living with neurologic disease. Their daughter Thisbe began showing the signs of a rare neuromuscular disorder when she was 16-months. It was a disease that robbed her body the joys of being a little girl, making her dependent on machines to eat and breathe. Just shy of her third birthday, Thisbe took her last breath; and her parents promised never again. But again came too soon as their younger son Noah began to have the symptoms of the same rare neuromuscular disorder just one month later. This unthinkable nightmare continued with Noah’s death a year after his sister’s. Two children. One promise. In the following years, John and Laurian worked towards fulfilling their promise; and, in 2011, it was realized when the gene causing this deadly disease was identified. This research feat subsequently allowed them to have two healthy children and set forth this same possibility for future families. Heroes didn’t have to show up for John and Laurian; they simply stood up.