Mother Walks over 150 Miles for Access to Medicinal CBD for her Daughter

Meet Vera Twomey,

A mother, who for the second time, has taken it upon herself to walk from Cork to Dublin to raise awareness and demand change in legislation to allow her daughter access to CBD therapy as prescribed by a doctor.

Her daughter, Ava, is six years old and suffers with Dravet's Syndrome. A detailed overview of this condition can be found with a quick Google search should you want to know more. Ava can suffer up to twenty seizures per day and the severity of the seizures may be seen in the video below:

*Please note some may find this distressing*



This is Vera's second time making the 260km (and more) by foot in an effort to allow them access to CBD therapy through a prescription. As of now, CBD oil or is legal in Ireland however does not have the backing of the HSE - Ireland's health service body/management. Vera has also had meetings with Simon Harris TD (our Minister for Health) who himself has commented on the above video as “difficult to watch” yet nothing has changed.

“It’s not a registered medicine in Ireland, but it certainly is a medicine for what it’s done to change Ava’s life,” she said, telling D’Arcy that once she started giving Ava cannabis-based products, her seizures reduced to around a handful a month. Ava is also starting to perform much better in school since the seizures reduced in frequency, with the CBD oil costing around €300 a month. In terms of what she wants, Twomey was quite clear in terms of access to cannabis-based products: What we want from the Minister is the opportunity to get medicinal cannabis on prescription from our doctor. She has conveyed the severity of Ava’s condition to Minister Harris before today’s meeting, and warned him again today that the seizures could eventually cause brain damage to Ava or could even result in death. Twomey added that, despite the high profile that Ava’s case has garnered in recent months, nothing had really been done to change the situation she was in. When Twomey and her husband, Paul, released the video to TV3, they said they had reached their “last straw” and felt like they badly needed something to be done.

Excerpt taken from: www.thejournal.ie...

Right now this amazing person is probably just over halfway through her journey as she marches to Dáil Éireann in Dublin City Centre to plead with the powers that be for her daughter's right to live surrounded by supporters moved by the Twomey's story. She'll be walking through my town on Sunday and I hope to join her for 20k. At the moment this woman is battling the elements, it's wet, windy and cold and is suffering with tonsillitis but she keeps going for the life of her child.

I just find her story inspirational and felt it should be shared as it's just amazing to me that one human (or a collective) can deny a child the right to be healthy. How a representative of the people can deny a child a healthy and happy childhood is beyond me - although with recent revelations about the track record this country has in treating it's most vulnerable citizens I have to say I'm not even shocked any more. It's excruciatingly disappointing and disgusting yes. Surprising? Not so much.

Keep going Vera, there's so many behind you on this.

a reply to: eire91

Now that is the proper way to ask your doctor what is right for one self!

Is there a gofundme page set up for this Mother... to ease her journey? I'd like to help if so...

Great story... S+F for such a positive thread!

This is awful. Why is there no worldwide independent cannabis coalition that could step in and either provide medical grade cbd oils to people who need them or at least funding for the oils for people who insurance won't cover it?
Seems like that type of professional approach to genuinely prove that cannabis can help legitimately in medical treatments. Rather than just condemn it as a party drug because retarded people that smoke can't behave in public.

a reply to: ttobban

I didn't even think about the go fund me page idea- I hope she.does, or at least someone sets it up for her.

a reply to: ttobban

I'm not sure, I have come across one myself but there were only a few who donated and there have been no requests from her to donate anything let alone money so I'm not sure if it's genuine. But that's so nice of you!

I do know though, that there have been people offering her clothing and food and places to stay while she stops for the night free of charge and giving their support publicly.

You can see her journey on this facebook page if you want to have a more detailed look: www.facebook.com...

a reply to: Natas0114

I literally believe it is down to money.

There are many things happening on this little island that I am almost tearing my hair out over at the moment, I'm not even going to get in to it. But to imagine a public representative has more or less given the death sentence for every day he lets this little girl go without treatment is beyond comprehension.

I don't have children but I can understand how this lady is at her wits end.

a reply to: Natas0114

It is an amazing idea but I don't feel that this woman is looking for money. It is about affordability for Ava's treatment but how can you put a price on a life? If she set up a GoFundMe account that would give the government a free pass. Only after years of being told 'bend over and take it' we are finally saying enough is enough. This woman is marching for far more than her child's access to treatment, I believe. I think that's why so many people are behind this.

That and the fact that probably everyone knows at least someone that could benefit from the use of CBD medicinally.

a reply to: eire91

Thanks for the info. I have a couple freinds in Ireland, and will be calling them to see if they are available to help out. Other than that all I can do is attempt to get some cash to this lady.
It's heartbreaking when someone can't get care or medicine for their children, due to ignorance on behalf of politics and businessman.

a reply to: Natas0114

I am with you. I would do whatever for my kids, or anyone elses for that matter. Sick of profit margins dictating who lives and dies, and when or how. This government meddling with peoples rights to live has got to stop. If it's illegal to take your own life what right does the government have to take it from you when you've committed no crime other than being born.

a reply to: Natas0114

You're a good soul pressure right now is what she needs, pressure on the government to change the legislation or at least make an exception for Ava. I know there are two marches planned in the coming days so it will be interesting to see what the turnout will be. I don't even know this woman but I am a firm believer in CBD therapy with certain ailments. As of last year we have been heading in the same direction as the US in terms of private healthcare and our public health care system is overloaded as it is and I can only see it getting worse in the future.

It really is sick how these individuals can dictate a life of another. Right now there are so many things happening here, as there are everywhere, that go against human nature. The Minister for Health has had meetings with Vera and Paul (Ava's father) and rejected their pleas. How can you look another person in the eye knowing that you are denying the chance to help their child have a better life.

a reply to: eire91

I initially read the few initial links I looked up and they said she was in pain and sick as she walked... I do not like the thought of that. There's a short video on the FB page you linked that shows a great showing of support, good spirits because people are coming together for just cause, and that I'd bet the legislation gets passed due to this movement!

I'd give anything for entire revolutions to happen in the same format that this brave woman is doing and achieving... a very inspirational story. Thanks again for sharing!

Ireland is in the gofundme network. The funds can be converted to needed supplies or donated to Ava's care directly. Anyone can set it up I believe. You mentioned that you will see her mother Sunday... maybe you could obtain the contact information to pass the collections to Ava then?

a reply to: ttobban

She really is inspirational and that's what I wanted to bring in this thread. It is a peaceful movement and there are lots of people behind her, meeting her along the way and reading more posts on the facebook page I've seen that there are planned protests around the country tomorrow in different towns.

Looking at a video posted she says there are two paediatric neurologists on standby waiting for the legislation to change in order to offer treatment to Ava with CBD therapy. There has been no response as of yet from Simon Harris TD and she will continue until she gets one. The fact they're not even acknowledging her at the moment is good as they do not know how to approach, I think. They did the same with the water charges when the protests were happening, ignoring it in the hope it will go away.

I appreciate the sentiment in wanting to donate, I looked for a go fund me page when the media coverage began but to no avail. I am walking with her on Sunday as I'm sure many will. She is due to depart from Portlaoise town at 9AM that morning and it'll be about 20km to where I live, hopefully without imposing I'll ask about a fund and I can update on the matter when I get home.

She's a trooper, I know myself how bad tonsillitis is and having your knees strapped up on top of that while facing the weather we've got at the moment is not easy. Like I mentioned in another reply, I don't know this woman or her family and I don't have children and do not plan to, but I am so moved by her plight that the more people that walk beside her, the better.

originally posted by: Natas0114
a reply to: ttobban

I didn't even think about the go fund me page idea- I hope she.does, or at least someone sets it up for her.

Darn this is so sad. Bless her heart.


If you set up a cause thread ATS mods will shut it down now matter how good it is.


Just part of the T and C.

I started a thread a couple years back about a little 5 year old that went to my son's school, she was dying of terminal brain tumors, and had about 6 months to live. All she was asking for was cards and letters from people around the world, places she would never see and people she would never meet.

It was shut down by Nefermore with great regrets, but the T and C won't allow causes here on ATS for legal reasons. As soon as you post a link to donate, or addresses, phone numbers, etc. it will get shut down.

Just an FYI

Good for sharing, and the desire to help out. I hope this if anything helps the news spread to the very top so it is addressed accordingly. She sorely needs the help as do other to easier obtain this. Laws need to change, protect these patients.

Personally, In the US in one particular state that I know of that banned marijuana throughout, has only a select few on the list for medicinal help, when many more are left suffering.

Hey guys,

For anyone that's interested, here is Vera arriving in a little town just down the road from me. For such a small town it was a great turnout and this video is a little reflection of the support she's been meeting throughout her journey. She has about seventy kilometres left to go before she is outside the Dail.

She looks exhausted and I don't know how she's still going. When the video was taken the temperature in my car was reading about 3 degrees and the wind would cut you in half.



I didn't walk with her today as I had hoped I only got to meet her when she landed here, so unfortunately I did not get the chance to speak with her to find out about donations. If any of you guys would really really like to, drop a message to the Hope for Ava facebook page linked in the above replies and they may be able to give more information.

There has been support as far out as Sydney, so if you could, share a post on facebook from the Hope for Ava page and lets get this really going. The establishment here has been getting absolutely dogged over the past few days especially with the media coverage of the Tuam babies so the government's track record in looking after children of the state is in tatters, so the more pressure and attention this gets, the better for Ava and it will make Vera's and Paul's journey worth it. Use hashtags, share her posts and even email our Minister if you feel the need to: [email protected]. Let him know that people from the outside can see what he is doing.

Thanks guys,

Eire.

a reply to: eire91

Have been keeping the Cause and that poor girl in my thoughts... thank you very much for the update. I will most certainly look into sending a few words of support for the cause... keep up the good fight!!!