Nova Leigh was diagnosed with Schizencephaly when she turned two months old.
I will never forget how it felt when I got the news that our daughter was born with only a quarter of her brain.
Schizencephaly is a rare grey matter malformation of the brain. The child is born with slits, or “clefts” in the brain, resulting in many delays, blindness, adrenal insufficiency, low muscle tone, and inevitably, devastating seizures.
Nova had her first seizure at three months old. The seizure activity started out as infantile spasms, barley recognizable as seizures to the unseasoned eye.
I dove head first into a new life of research, endless seizure medications, reaching out to parents who have children with this rare disorder, hospital stays, therapies, tubes going in and out of every hole in my daughters body, and having to adjust to our new reality. in hindsight… It was a like living in a nightmare. Through it all, I watched my daughter fight. I hoped for a better life for her, and I was ready to do anything so that she could have that.
We went together, through a very scary and dark battle for two years. Every day was uncertain.
Novas seizures progressed like I could have never imagined. The minor spasms gradually turned into something harsher, scarier. By the time nova was two, I found myself cradling her in my arms sitting on my bed while she shook uncontrollably. Her face in shades of white and grey. Foam coming from her mouth, eyes rolled back, and completely unresponsive.
The world stood still while paramedics rushed in to revive nova.
The whole world was asking me a million questions about this medicine and that medicine. About one hospital stay or another. Some doctors gave up and passed us on to someone else. Some of them stuck with us and tried to provide the best care possible, but every night when I laid down to go to sleep I knew in my heart they could not help her any more than they already had. The medicines didn’t work to control her seizures. They only got worse. We ended up in the children’s hospital once more for a week long EEG, which ended up revealing a horrible truth. Novaleigh was showing 24/7 seizure activity. It was unbelievable that it had gotten this bad. Enough to make your head spin. Enough to make you not want to eat anymore. Enough to make you question literally everything you’ve ever known.
A team of doctors sat me down in the hospital. And they told me we were at the end of the line and the last option to treat Novas seizures, was a corpus colostomy and a leisonectomy. To split., and remove, most of the brain she had… Leaving her with 3 to 5 percent of a brain. IF she made it through the surgery.
I was scared out of my wits. I couldn’t think straight. I couldn’t sleep and I didn’t want to stay awake.
And then someone came to me. And she asked me
“What are you waiting for?”
So we threw away all of our belongings. Broke our leases and packed our four seater car to the roof with only what we absolutely needed to have. Left our families, and we headed north to Colorado.
Fast forward to now… And we still have the same case of diastat that we came here with three months ago, when we used to go through a whole case a day. Novaleigh has been on cannabis oil for a few months and the results have been nothing short of a miracle.
Not only have I seen nova go up to 12 days without having a seizure, she is talking like doctors never said she would… I waited almost three years, and I finally hear my baby say “mama” every day now. She grabs her toys. She plays with them. She holds onto them for long periods of time without losing her grip. She can keep her head held up straight. Her personality and attitude and happy disposition are apparent, every day. If you’re around nova for more than fifteen minutes you’re bound to see her have one of her awesome happy fits… Now, I get to listen to my daughter laugh uncontrollably at the good things in this world surrounding her, now she is aware that she is her own person and she has preferences, and different moods. Her seizures are at bay most days, freeing her up, to take everything in. She gets to live her life now and she’s absolutely in love with it.
Nova is better now. We had gotten so used to round the clock seizures, it made us numb. But now when her father and I see even the slightest twitch, my heart drops and I can’t believe it. We only see a few now and it won’t ever be completely better, but it is definitely 95 percent better than it used to be. I can never be certain about too much — but one thing I am sure of. I will never make my child go a day in her life without her cannabis oil again. Nova will see her third birthday next week, thanks to cannabis oil. Nova put up one good fight. She made it, she’s living now, and our nightmare is in the past.
Cannabis oil saved my daughters life!