Ava’s doing great but why is our family split?

Ava’s doing great but why is our family split?
Minister for Health, Simon Harris, T.D., speaking with Vera Twomey and her husband Paul Barry during his visit to Mallow General Hospital where he openrd the Mallow Injury Unit. Picture: Denis Minihane.

“Ava will get her medication here in Ireland, absolutely, without a shadow of a doubt. If I have to put on my coat and walk back to Dublin for Ava's medication, believe me, I will do it. She cannot just be abandoned over there. We have what she needs, we have found the solution and it's up to the Government and the neurologist to provide the pathway to bring her home.”

It's almost two years since seven-year-old Ava Barry, from Aghabullogue in mid-Cork, was sent home from an Irish hospital.

Her parents had been told that they should make her as comfortable as possible as there was no more than could be done for her.

All pharmaceutical medication options had been exhausted to alleviate her Dravet Syndrome - a rare form of epilepsy that caused her to have multiple seizures a day.

The seizures, aggressive in nature, left Ava in constant danger of brain damage and were constantly life threatening.

Her parents Vera Twomey and Paul Barry never knew if the next seizure would be the one to claim her life.

Fast forward to 2017 and Ava is making significant progress with her intellectual development and health despite being held back by her illness for so long.

Now being treated with THC and CBD medicinal cannabis oil, that her family believe is the right course of treatment but is illegal in Ireland, she is far more responsive and has learned to dance and sing – as exemplified by family footage that was broadcast on TV3 news earlier this week.

The whole family, including Vera's husband Paul and their three other young children, have been through hell and back before relocating to Holland.

They moved to the Hague in June after receiving word that Dutch doctors would treat Ava with medicinal cannabis. However, Vera returned to Ireland last week with young kids Michael and Sophia due to return to school in their home village.

Ava remains in continental Europe with her dad, her family split in two, due to legalities, blocked legislation and the lack of a neurologist who is willing to oversee Ava's treatment in Ireland.

The split has left the family, which also includes two-year-old Elvera-Mae, in a state of limbo and not knowing when they will be able to reunite.

Vera is a formidable woman. She has to be. After spending countless days worrying about Ava's progress and quality of life over the years, those fears have begun to ease due to her rapid progress in recent months.

However, life for Vera's family remains a struggle with Ava and her dad marooned in Holland.

Vera's other three children are devastated by their father and sister's absence from the family home in Cork.

Reams of research from across the world has seen medicinal cannabis legalised in 30 states and 11 EU countries, for certain conditions, where programmes are run to allow patients with chronic pain illnesses access to THC-based cannabis products.

Vera has campaigned vigorously over the last year to try and get medicinal cannabis for Ava in Ireland but has so far been met with stern resistance from authorities and doctors.

In March, she embarked on a walk to Leinster House in Dublin from Aghabullogue to raise awareness of Ava's illness.

There, she met Health Minister Simon Harris and discussed Ava's plight. She hasn't heard from Minister Harris since.

In July, an Oireachtas Health Committee rejected a bill to legalise medicinal cannabis brought forward by People Before Profit TD Gino Kenny on the grounds that the legislation would not safeguard against supply of medicinal cannabis falling into the wrong hands for recreational use.

Minister Harris confirmed this week that no consultant has applied for a medicinal cannabis licence to treat patients despite the option being available for medicines that are not legal.

A compassionate access programme for illegal medicines is expected to be operational later this year but will only be open to people who receive confirmation from their consultant that medicinal cannabis is the appropriate treatment.

Vera and Paul have been unable to find an Irish consultant that believes it will benefit Ava's condition in this country.

This is in contrast to The Health Products Regulatory Authority reporting to Minister Harris earlier this year that medicinal cannabis should be prescribed for patients with severe epilepsy.

Vera's boundless enthusiasm, which is admirable under the circumstances, is no doubt fuelled by the vindication of watching Ava become the bright and alert little person she always knew she could be since moving to Holland.

“We are really getting to know Ava like we should have been doing all along,” says Vera.

“She's been through an awful lot. I've caught some of it on video but there are more things that we don't get because you're not filming all day long. We are really proud of her. The seizures have just eased away.

“She doesn't really get them anymore, it's amazing. The worst thing that would happen is that she might get a little shudder with a high temperature like any child with an infection could react. It's a different world completely.

“Pharmaceutical medication is not responsible for her improvement because we have been on it for seven years. She has never looked at me and started singing like she has done lately. She has never been able to recall a song that she hears an hour earlier and still have it in her head that she liked singing.

“Her balance has improved as you can see from her dancing and spinning around in the video. If you look at it, you'll see that the music started playing, but the song changed and she identified that. The second song she didn't like as much as the first so she stopped dancing. When the first piece came on again, she started dancing again.

“I have never before had Ava respond to her name when you call her. I'd always had to call her a few times to get her attention because if the delay. Her eating has improved. She would never have been able to eat consistently by herself at each meal day by day. Now, she can eat herself and it's more natural and she takes her time but that's just her, she's easy going.

“Even her demeanor and her stance; you can see that she's less constricted and not in pain. She's able to run around. Previously, if she was out in the garden she could run but she would topple over. It's not like that anymore.”

However, there is a threat Ava's progress. The family has no indication of how long Ava and her dad will have to remain living in Holland before the Department of Health and Ava's Irish neurologist will accept the clinical evidence from their Dutch colleagues and agree to treat her within the same conditions.

“This separation is devastating,” says Vera.

“It's really so cruel. Someone like Ava earns her progress so hard. Everything that she ever achieved. Every word that she ever garnered, she worked so hard for it. Every jigsaw, every little storybook, she had to work a hundred times harder to get that into her head unlike any other children without difficulties would have to do.

“She needs every aspect of help and support. She just needs the love of the people around her and the support of her brother and sisters. They're a support to her in their own way to her because they love her and they are all interacting. That has been taken away from her now. That's an awful loss and she has such a struggle anyway that this additional pressure being put on her is really disgusting.

“The thing is, she may not be able to verbalise it, but it doesn't mean that she doesn't feel it or doesn't miss us. Paul says her sleep was disturbed after we went so it's displayed in other ways that she misses us.

“I'd be very interested to find out what more I can do. We were told to go and get clinical evidence and we did what they asked us to do. Did they imagine that we've never leave the country? I don't know.” 

Vera feels she and her husband Paul have been vindicated by the progress in Ava since she began her treatment under the Dutch medical system and now she wants to enter meaningful dialogue with Minister Harris once more.

She feels the evidence of Ava's improvement can no longer be ignored and she should be allowed to return home.

“I think it would be very beneficial if Simon would talk to me. I would like to have a conversation with him because I would like to tell him myself how well she's doing. I think that would be beneficial to him as much as to us. When you are sending information via email it's just not the same. I think Ava deserves Simon Harris to contact her family to talk about this, I really do.” 

Despite having every door shut in her face, Vera believes it is only a matter of time before the Ava can be treated in her own country.

“I don't know how long it will be, but I will not give up on my child. There is no way that they can resist this. We will get medication for this child because she deserves a chance."

A GoFundMe page, set up to help the family with the costs of medical treatment and living expenses in Holland, can be accessed at www.gofundme.com/qcn2a-ava-barry. 

Alternatively, those who would like to donate can do so privately at AIB branches by asking about the Ava Barry account.

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