Jan 15, 2013 Latest post:
Jan 24, 2017
Welcome to Harlow's site. We've created it to keep friends and family updated on her Dravet Syndrome diagnosis. We appreciate your support and words of hope and encouragement.
Our daughter, Harlow Darling, was born on September 18, 2011. It was the perfect birth where we met our perfectly healthy baby girl we had dreamt of for so long. Just three months later, Harlow would have her first seizure. I was home with her and truly did not understand what I was seeing, but eventually realized it was a seizure and called 911. Twenty-six minutes, several rescue meds, a spinal tap, a second ambulance ride and many other pokes and procedures later the seizure stopped and we were told our baby had epilepsy.
After many more frightening, prolonged seizures with ambulance rides and stays in the PICU, it was confirmed through genetic testing that Harlow has Dravet Syndrome. Dravet is a rare, catastrophic and intractable form of epilepsy that causes development, physical, behavioral and speech issues among other possible comorbities. Since DS is caused by a genetic mutation and there is no cure, she will not outgrow the seizures and prognosis is poor.
Our dream of what parenting would be was completely turned upside down. Our lives are now filled with coping with daily seizures, doctor’s appointments, weekly therapies, medical paperwork and bills and fighting for new treatments to save our daughter’s life. But what it is also filled with is the deepest love and appreciation of life that we may have never known. Our sweet, funny Harlow spreads joy and love to anyone who meets her.