*We have a very special story to share with you. It’s a bit of a long read, but it’s worth it. If you’re short on time and want to skip to the part about how you can be involved, click here.

Ava is a seven year old, beautiful young girl from Ireland. At the age of four months old, she had her first grand mal seizure. It lasted for 45 minutes. Shortly after, she was diagnosed with a condition called Dravet syndrome,a debilitating form of epilepsy that doesn’t respond to conventional medication and leaves a host of developmental challenges in its wake.

Ava’s seizures can last anywhere from a couple of minutes to several hours. One seizure was so bad, it left Ava in cardiac arrest. After years of failed attempts to get Ava’s seizures under control, the family was granted permission from the Irish government to treat her with a CBD-only strain of medical cannabis. Ava’s seizures reduced dramatically, by approximately 85%. While on this CBD treatment, Ava experienced her longest seizure free stretch in 7 years, a previously unreachable 11 days. This is indeed a great start.

But Ava’s family wants more than 85% improvement. Doesn’t every child deserve the opportunity for 100% health?

A combination of CBD (one of the compounds found in cannabis) and THC (the psychoactive component in cannabis) is widely accepted as sound treatment among knowing medical cannabis professionals and among many parents who have tried it with their children in states that allow it. Sadly, there is still shockingly little clinical evidence to support these case studies. However, the esteemed European Journal of Epilepsy, “Seizure” published Israel’s 2016 clinical study on cannabis medicine in the treatment of epilepsy. The conclusion demonstrated extremely promising results.The ratios they used in their study of 74 pediatric patients were 20% CBD 0.5-1% THC.

Ireland’s outdated regulatory approach doesn’t allow more than 0.2% of THC into the country, therefore thwarting Ava’s right to explore this clinically evidenced treatment option.

In an effort to raise awareness for Ava’s plight, and to push for more developed medical cannabis policy in Ireland, Vera  took part in a 200km walk from Cork to Dublin in March of 2017. This was followed by a failed attempt to bring prescribed medical cannabis in from Spain in April (she was stopped at customs after declaring Ava’s medicine).

Vera Twomey and supporters lobbying for medical cannabis to save her daughter Ava in Ireland

Vera Twomey and supporters lobbying for medical cannabis to save her daughter Ava in Ireland

Vera continued the fight for Ava’s healthcare, orchestrating a peaceful sit-down protest in front of Leinster House in May, requesting an audience with the Minister for Health to discuss the rights of patients to have complete access to medical cannabis, not just CBD. Vera’s efforts were denied and she and her supporters were forcibly but “decently” removed from the front of the parliamentary building.

Still, there is no change in policy and in order to receive this “whole plant” cannabis option, (in an oil drop formula designed specifically for Ava), Ava and her family were forced to leave their homeland and move to Holland on their own dime.

Ava’s mother, Vera Twomey has been a dear friend of CananTech’s since we first met her at the International Conference on Medical Cannabis hosted at the European Parliament in Brussels last year. We have been following her story closely ever since. I had the great pleasure of speaking with Vera earlier this week, from their new temporary residence in Holland.

What follows are bits from our phone conversation July 12, 2017 (edited ever so slightly for flow and consistency). This is their story and we are honored to share it with you.

Vera, how are you?

We’re doing well. We’re sad that we’re not at home in Ireland. But the children are the most important thing. Ava is nine days seizure free, since the day she began the CBD and THC treatment, she hasn’t had a seizure!

We are seeing a gentle change before our eyes. She’s eating better and drinking better. She’s actually able to feed herself more frequently than what she was. She’s happier. She looks more relaxed.

This medication is working.

What made you so confident that the addition of THC was the right thing?

I did have concerns that the addition of the THC might not help us, but the thing about it was, that we didn’t have another alternative.

I knew that two things were going to happen: either it was going to improve things, or it wasn’t. The main thing is that we had to try. We know it has been successful for other children with Dravet syndrome, so we needed to have that experience to see whether it would work for Ava or not. Thank the Lord, it is working.

Has Ava ever been seizure free for this long?

She was 11 days seizure free from October 1st, the day we started the CBD oil treatment. 11 days was the best result we had. Now we’re on nine days, and I think if we get past 11 days, I probably won’t be able to speak at all, I’ll be such an emotional wreck. Ya know?

It is so encouraging to see such a huge outpouring of love and support online. Can you tell me a little about how that has been for your family?

I really can’t even tell you. If we didn’t have the positivity coming out at us from Facebook, Messenger, Twitter, people, like yourself, reaching out and calling, wanting to learn more about our story.,..I don’t think I’d be able to cope.

It’s that positivity that helps us go on and reassure myself that there are other people out there that think that what we’re doing is right. That is incredible.

Have you had that same kind of support back in Ireland?

Ava Barry, two days seizure free, Holland, July 2017

Ava Barry, two days seizure free, Holland, July 2017

Sadly, and terribly really, we haven’t got support from our medical team in Ireland at all.

When we arrived in Holland, the medical professionals are different kinds of people completely.

They are caring and practical, they listen and are respectful. As a parent. I feel like these doctors here are taking me seriously. They listened to me when I told them that none of the pharmaceuticals were working for Ava.

The comparison at home… if you say to a doctor in Ireland that the pharmaceuticals aren’t working, they said “there’s nothing more we can do.” But here, it’s different. Here in Holland there is an actual interest to find something that works for our child.

What you’re describing about the medical care in Holland sounds like a logical and appropriate response. It’s hard for me to imagine a different response…

The thing about it is, the people here [in Holland] are very practical and logical. They are shocked and appalled at the attitude that Ava and our family received back home. Here,they are professional, with no imbalance between their knowledge of pharmaceuticals and their willingness to try medical cannabis.

Ava had tried 11 different pharmaceuticals:.Frisium, Rivotril, benzodiazepines, Phenobarbital, Keppra, Topamax, Stiripentol, Klonopin.

The reaction that she had to the Stiripentol nearly killed her. She was overdosed in the hospital when she was four and half years old and it placed her in a coma for a week. When she came out [of the coma], she had lost the ability to walk and she had lost the words that she had gathered. We spent a year trying to get her back on her feet, learning to walk and talk again.

Another time she went into cardiac arrest.

The Rivirol left Ava rocking back and forth, and drooling. When she was 5-6 years old, she had to wear a bib that needed to be changed many times throughout the day because she was drooling so much.

The pharmaceuticals have not been successful at all.

Anyone who says that medicinal cannabis is detrimental to the brain development of a child, I would argue that the pharmaceuticals left her unable to speak or walk.

My greatest regret is that we weren’t able to access medical cannabis sooner. We had faith in our doctors for a long period of time. We staggered from one pharma medication to the next.  At one point Ava was on five different medications and she was taking 16 different tablets a day. Every time [the doctors] said the next one is going to be the one to help her. Of course, it didn’t.

This is not just about Ava. This is the protocol for other families with children that have the same condition. There’s no sense in what the Health Committee in Ireland are saying, about lack of clinical evidence. It is nonsensical to suggest that a medication would be legal in 29 states in the US, and in 11 different countries around Europe if there wasn’t enough evidence to support it, clinical or otherwise.

Ava’s dad Paul chimed in and added:

“It’s disgraceful to be driven out of our country. Our daughter just needs medicine.”

Vera Twomey and Ava Barry, an Irish family's quest for cannabis medicine for Dravet Syndrome

I believe that even small voices can make a big impact, we have seen it all around the globe with different mothers fighting for their children’s right to medicine and actually changing policy.

I will not give up on Ava. I don’t care if it’s the last breath in my body, I will give it for this child. I‘m not a doctor, but I can see for myself, when we began the CBD, the seizures went away. And now we’re seeing it again, I think that this medicine is stronger and more compatible. Time will tell, but the optimism is here.

I want to come home. But there is no way I am coming home a criminal. I am coming home with a license for this medication for my child or Ava’s not coming home at all.

If I have to split up my family then, G-d help me, I will. I don’t want to further disrupt my other children’s lives because of Ava’s illness. I want them to go back to their schools in September. I don’t want my nearly 5 year old son to have to start school in Holland because Simon Harris (Ireland’s Minister of Health) won’t allow us back.  If my kids are separated from their father and sister we’ll have to deal with it.

Ava is an absolute angel..it’s just brilliant to see her having the power to feed herself. I don’t know where she gets the fight from, but she’s a fierce ferocious battler – and she just needs a chance to harness that strength.

Vera may not know where Ava gets her strength and fight from, but it seems pretty clear to me that she simply comes from good, strong stock.

Because the treating neurologist in Ireland was unwilling to sign off on treatment abroad, Ava’s family has had to finance this entire move themselves and all the medical treatment themselves. if you would like to contribute, please visit their Go Fund Me campaign.

And follow Ava’s progress Vera’s facebook page & Hope for Ava.

To learn more about global regulation in cannabis medicine, and to understand the scientific, financial and social implications that a sound medical cannabis program is and can be, join Vera at CannaTech UK this October.

CannaTech CannaTech Cannabis Innovation Summit

Comments

comments

Pin It on Pinterest