The Nichols family was so overwhelmed by what the Ride to Give Army and followers of Tripp Halstead Updates did for them this Christmas that they asked for one more thing... to be allowed to pay it forward. So Ride to Give wants to answer their thoughtful holiday request.
Three year old Novaleigh Harris was born August 16th, 2011 in Austin, Texas to Barbara Bunker and Joseph Harris. At the time of her birth, Nova's parents we just babies themselves but truly devoted to one another. Besides being super nervous, they were excited to meet their little girl. Nova's birth was typical and they didn't suspect there was anything wrong with their baby until she was two months old. Nova's newborn screening can back with irregular thyroid levels so she was sent to an endocrinologist who ordered an MRI to check out Nova's pituitary gland. This was on Friday. On Saturday, Barbara and Joseph received the call that would change their lives forever.
The endocrinologist informed them their sweet baby girl was born with only half a brain.
Schizencephaly is a developmental disorder of the brain characterized by abnormal clefts in the cerebral hemispheres. It is extremely rare and the exact cause is unknown. Nova's parents were told that she would soon start having seizures, might never walk or talk and was blind. They were to drop everything and bring Nova to the hospital. Since that first hospital visit, there have been numerous medical interventions, treatments and therapies. She has been on countless medications to help regulate her pituitary gland, her sodium levels and to attempt to control her seizures.
They have have tried five antiepileptic drugs with Nova in an effort to prevent her seizures. At her worst, Nova was having upwards of 150 myoclonic, atonic, and grand mal seizures a day. Many days, Nova was in "status" or suffering constant seizures without recovery of consciousness in between. They started stacking seizure pills on seizure pills, and nothing worked. The last option was brain surgery that would amost positively be fatal.
At this point, Barbara and Joseph decided they HAD to move to Colorado to try CBD oil.
On May1st 2014 they packed what would fit in their small car, left their support system in Texas, and moved to Colorado Springs.
From the first dose of CBD oil, Nova's life was changed. Barbara says within an hour of giving Nova the oil she came alive, and they felt like they meet their child for the first time. 24 hours before, Nova was having endless seizures, jerking, shaking and stiff, and then loose, lifeless and limp. After the oil, her eyes were open, she smiled, laughed and started moving. It felt like a miracle.
They will remain in Colorado until CBD oil is made legal in Texas. They will do what they can to keep her growing and exploring more of the world. They have begun the painful weaning off of the worst of the epilepsy drugs and have a long road ahead of them to rid Nova the benzodiazepines.
When they left Texas, they had to leave nearly everything behind including Nova's hospital bed, seating system, bath chair, toys, furniture, and feeding tube stand. They have made due with what they have, but this Christmas, Ride to Give wants to replace the items they have lost, and improve upon some of them since since Nova is now "awake" and is now able to interact with the world around her.
Please help us help the Nichols pay it forward and support Novaleigh in true Ride to Give Army style. Please read more about Nova on Facebook here.
