Avery

By Jon Spadafora

When Avery was born 5 weeks early, we had no indication that she was going to be special in any way. We brought her home from the hospital as a very well behaved baby, who appeared to be happy and healthy. After getting her home, we realized that she slept a lot more than our other children had, but with two older children in the house, we understood that babies are unique and we didn’t worry about it. As the months went by, our family began to grow concerned as she missed milestones that the pediatricians use to measure development. By the time Avery was 8 months old, we were getting used to spending hours doing tests and meeting with various specialists to learn how we could help our daughter. Throughout this time, my wife and I were always thankful that in spite of her developmental delays, Avery was healthy.

 

When she was 18 months old, Avery had her first seizure. She was taking a nap in her stroller during our 4th of July party and to say that it took us by surprise is an understatement. My wife took it upon herself to learn what was causing Avery’s seizures and orchestrated visits to some of the best pediatric Neurologists around the country, in the hope that one of them would take a special interest in our child and help us to understand what was happening, so that we could treat and help her. With substandard medical options in our home of Las Vegas, we visited Boston Children’s, Texas Children’s, Colorado Children's, and UCLA, always nervous as we walked into these gigantic research hospitals, hoping that the answer was at the top of the elevator. We always left with the same disappointed feeling after we watched our daughter be poked with needles, endure overnight EEGs, sleep studies, MRIs, and what seems like endless tests, only to be told that her condition does not fit the definition of any the doctor was familiar with.

 

While we were focused on finding answers, a geneticist at UCLA introduced us to the Chief of Pediatric Epilepsy at UCLA and suggested that we meet with him. Not liking the options at home, he eventually became Avery’s neurologist, helping to guide us through the maze of seizure medications available. Without a clear diagnosis on the type of seizures that Avery was experiencing, it was challenging for him to identify the right medicine to treat them. So we tried them all. Some helped for a short period of time, some were promising and some were scary, but at the end of the day none of them were the answer. It was increasingly frustrating to leave her appointments without answers, as we watched the frequency and intensity of her night time seizures increase. They would come in spurts of 1-4 per night, with some lasting only 45 seconds but others going on for 45 minutes. The stress on our family seemed to increase each month, as Avery, my wife, and I failed to sleep for entire night at any time. They got so bad that Avery’s siblings would hear her and wake up to sit with my wife or I as we tried to calm her down. Perhaps the worst of all was that we were watching milestones that Avery was gaining, the ability to play peek-a-boo, or making a ‘MMMMM’ sound when she wanted her mom, disappear. We were concerned that the seizures were the reasons she seemed to lose these things that she worked very hard to gain.

 

Last April, while visiting Avery’s neurologist in LA, we were told that we had run through the majority of the seizure medications that he would recommend, and were down to just a few options. The first was an experimental drug, which had recently gained approval for use in the United States. The next was a diet that is extremely high in fat that would likely require a feeding tube and hospitalization to implement. And the last, was to explore brain surgery and potentially cut out the part of Avery’s brain that caused the seizures. Having just watched the CNN story with Sanjay Gupta, my wife asked his opinion on CBD oil and treating with medical Marijuana. He was very honest and told us that while UCLA would not allow him to recommend it; he believed it might be an option to consider after the experimental drug. We left UCLA with the decision to try to the drug and if that didn’t work, to find a way to start CBD.

 

The next couple of months were tolerable as we started Fycompa. It never really worked to control the episodes, but we saw a reduction in their frequency and intensity that felt like a break. Then, sometime during the middle of the summer, they came back with a vengeance. Sandi and I spoke about it and decided to start the process of trying CBD oil. Unfortunately for us, there were some pretty big logistical challenges to contend with. First, we lived in Las Vegas. Next, it appeared that CBD oil was almost impossible to get as very few places were actually selling it to those that wanted to try it. After some research, we decided that we had to go to Colorado, to find out if it could work.

 

We took a road trip to visit Sandi’s sister and went through the steps of securing Avery’s red card. The journey was interesting to say the least. The first doctor’s office was as we hoped it would be. Professional and filled with people who really wanted to help people that the system has dubbed helpless. The next was a nightmare, operating out of what appeared to be an abandoned office building, with a waiting room full of all the characters from a pamphlet distributed by a politician against medical marijuana. We left the appointment confused and feeling like we were making a mistake to let our 6 year old daughter take anything prescribed by this place.

 

We had an appointment with the HO.P.E. Foundation shortly afterward, and decided to keep it, since we had already come so far. Not sure what to think when the GPS gave us the address of a home, we made the trek to Longmont and have thanked God every day since. Heather was warm, answered our questions, and seemed to genuinely care about helping our daughter. She showed us Jason’s lab and explained the process of receiving and administering the medicine.

 

Two days later, while I was traveling for work and Sandi was in her sister’s house, dealing with what seemed like Avery’s worst round of episodes yet, we decided to give it a try. I found a house for rent that was close to family and the H.OP.E. Foundation, and called the real estate agent from my hotel room. Sandi looked at the house and said it would work. When we got back to Vegas, we listed our home of 7 years for sale and packed. Three weeks later we pulled into Colorado, full of hope but not expecting a change as nothing had really worked for us yet.

 

A week later we picked up Avery’s medicine, and with butterflies in our stomach, gave her the first dose. That night she had a seizure, but it seemed to be less intense than they had been. We weren’t sure if it was better or if we just wanted it to be, but we continued to give her the medicine and we were shocked, when all of a sudden she went 18 nights without a seizure. We haven’t had 18 nights of sleep in a row since she had that first seizure, 5 years ago.

 

I don’t think it is possible to express how much we appreciate the effort that Jason, Heather, and the team, have sacrificed to give us back our child. Every day we are amazed when Avery wakes up bright eyed and ready to take on the day, having had a full night’s rest. She has occasional episodes, but never with the frequency or intensity that she used to. In fact, it is now more common to have her go all night without an issue than it is to have a night with seizures. More importantly, we are watching her personality develop and watching milestones come back to her. She is stronger. She plays peek-a-boo. She is gaining weight. And we couldn’t be more grateful!  Next Story >