Ms Vera Twomey:

I will try. I did not come as prepared as my colleagues. I was going to print out a little photograph to show the members my daughter Ava. I brought a number of pictures of her on my iPad, one of which shows her after she had a seizure. Perhaps the members would like to pass it around. Ava has Dravet syndrome and is six years old. Dravet syndrome is an intractable form of epilepsy. Ava can suffer from anything up to 50 seizures per day. She was diagnosed when she was four months of age. We took her to Macroom to get her vaccinated at 11 o'clock in the morning and then brought her home. By 8 p.m. that evening, she had her first 45-minute seizure. We took her to hospital by ambulance and we were obviously terribly frightened. When we got in, a considerable number of blood tests and other tests were carried out. Ava's bloods were sent to Glasgow for tests. After a number of weeks, the results came back and we were given the diagnosis of Dravet syndrome. It is an intractable form of epilepsy that causes multiple seizures of all types, including absences, drop seizures and tonic-clonic seizures, which are the ones where the individual falls to the ground and shakes.

The photograph I have circulated shows Ava after having had approximately a dozen seizures. One can see quite vividly that she is in a considerable amount of pain. It is very frightening. When she has that many seizures, we do not know what the outcome could be. She could come out of a seizure with a dramatic loss of skills. That has happened before. When she was about two years of age, she had five seizures, after which she lost the ability to walk. It originally took us two years to get her up on her feet and walking but after having those seizures together, it took us another year to get her back on her feet again. She did it, however.

I would like to show the committee a picture of my daughter at her best. It is a lot nicer. That is how she is. That is how we love to think of her when she is having seizures. I will explain what has happened during her treatment. She has gone through 11 different forms of medication. She began on phenobarbital and she has since gone though Frisium, Topamax, Epilim, stiripentol and many other medications. All of them were unsuccessful in treating her seizures. Some of them were successful for a short period, but the nature of Dravet syndrome is that it breaks through the medication - it makes its way around and the seizures begin again.

We were told 13 months ago that we had come to the conclusion of all the medications that were available to treat Ava's seizures. We were told there was nothing left for her to try other than the ketogenic diet, which is a regulated diet for children with epilepsy that can result in weight loss for some. It is quite severe. Members might be more familiar with it if I were to describe it as something close to a modified Atkins diet. I have been doing a considerable amount of research into medicinal cannabis. Many families in the US have moved to states where medicinal cannabis is available. We did not have access to that here last July, when it became known to me that the Charlotte's Web product, which has been mentioned by Dr. Doherty, was available in England. We were not comfortable with ordering Charlotte's Web online because we did not know exactly where it came from or anything like that. We were told in September that it was available in Dublin, so we decided to travel there. Fortunately for us, we met Joel Stanley, who is one of the producers of Charlotte's Web and is a very nice and ordinary person. He was very willing to talk. After discussing Ava's situation with him, we decided to purchase the Charlotte's Web product. Although we had done a great deal of research, it was very frightening to have this product in my hand. I was very concerned because I wanted to do the best thing for my daughter.

At the end of September, Ava had 23 tonic-clonic seizures in 36 hours. That was the worst bunch of seizures she had had for some time. Things were going in a bad direction for Ava, so we decided to begin to administer Charlotte's Web and see what would happen. After we started the Charlotte's Web treatment, Ava had seven seizures between 2 October and 31 October. I believe that was a reduction of between 80% and 90%. In previous months, Ava could have had seven seizures in two hours. It varied every day. We would not know what to expect from Monday to Tuesday. She might have ten seizures on Monday and two seizures on Tuesday. We experienced just seven seizures last month. This improvement was accompanied by an awakening of the child whom I knew was there the whole time. When Ava was diagnosed, we were told she would never walk or talk and would be in a wheelchair. These were presented as facts in Ava's future. Ava runs rather than walks when she goes to school and she likes to climb. We have to accept that she is not like every other child, but we can see how much she has achieved. Since we have been giving her the CBD oil, there has been an improvement in her awareness. She is now able to do something as simple as getting her shoes. When I ask her to get her shoes, there is a delay but she goes to pick them up. When I ask her to close the door, there is a pause but she does it. She has had little achievements like that. It has been noticed in school that she is more engaged with her peers and other students. She is better able to concentrate on school activities. Ava has improved dramatically on a broad scale, solely as a result of the use of Charlotte's Web.

While this product is completely legal, it is just one component of the marijuana or cannabis plant. We are anxious to get an opportunity to get the help of the doctors. We want the very best for Ava. I have seen in my own home that this is working. I can see that my daughter is standing up straighter. I think it is because she is in less pain. Ava is not non-verbal, but she has very few words. Her speech has been improving since we started to give her this oil. There is more chat and little sentences coming out of her. She is improving. This improvement could be enhanced dramatically if we had access to THC. Overall, we would prefer to be in a position where a doctor could prescribe this product for Ava. That would enable doctors to work with us, rather than being in a sort of grey area. We do not feel we can really talk to our doctor. I cannot say how our doctor feels, but I am sure that if doctors were allowed to prescribe this treatment, they would be able to play a bigger part in Ava's treatment and to help us more. That is what we would like to achieve. We hope the Government will come forward and help us with this.