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Mother pleads for help from Health Minister

Cork mother Vera Twomey is pleading with Health Minister Stephen Donnelly for help for her daughter Ava, who suffers from Dravet Syndrome, Vera issued a statement today in a desperate bid for help, which reads as follows:

“I have received two phone calls from Taoiseach Micheál Martin – this is after repeated contact with his office looking for his help to secure my daughter Ava’s delivery of her medical cannabis.

My daughter Ava Barry, who turns eleven this week, has Dravet Syndrome and has taken medicinal cannabis to control her seizures for the last four years. She has responded very well, and considering the serious outcome for Dravet Syndrome patients, its clear that medical cannabis has saved her life.

Before the era of Covid 19 I had to travel every twelve weeks to the Netherlands to purchase the medication and bring it back to Ireland. During the lock down the HSE have set a precedent and arranged importation and delivery of Ava’s medication.  They are also delivering to 40 other patients who are prescribed under individual licences. 

The HSE have told us, in writing, that the arrangement will cease once covid restrictions are lifted. My daughter has a compromised immune system and there exists a real danger that either Paul or I would contract covid 19 while travelling and bring it back to our daughter. It could cost Ava her life. 

I have been trying to contact Stephen Donnelly since he became Minister for Health and have not got an offer of any constructive nature from him. However after appearing on the Matt Cooper radio show today I received an email from his private secretary asking me to outline what we wish to discuss in a meeting – but no offer of a date or time for said meeting. From past experience the absence of a date and time suggest there is no sense of urgency regarding this issue. We know that the Minister is perfectly aware of what we want to speak to him about as Aindreas Moynihan TD spoke to him just last week about the issue.

We have little time or interest in being fobbed off as we have been by previous ministers. We state clearly that travelling to The Netherlands in covid times is unacceptably dangerous for our daughter’s wellbeing and, as already stated, the HSE have set a precedent by arranging importation and delivery of the medication. This arrangement must continue.

Micheál Martin and Stephen Donnelly must help resolve this straight forward issue.   The Taoiseach is up to speed on everything after our phone calls. We need a permanent solution that works and that dose not cost us, or the state, more than it should.

Right now, delivery is imperative.It must continue no matter what level of lockdown we’re under. 

Our priority is for our family members and our children who need security of access. Resolving this issue is down to Micheál Martin and Stephen Donnelly to implement change as a matter of urgency.”

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