A mother of three children has taken the very unusual steps of sleeping outside the offices of the Irish government buildings to highlight a case that is causing her (14) year old daughter to suffer on a daily basic. Mother of three, Hazel Robinson who has set up a tent outside the offices of Irish government officials at Dial Eireann, here in Dublin City. Hazel is highlighting cases not only her own daughter but anyone who has (CF) Cystic Fibrosis, here in Ireland who are awaiting to receive a treatment called Orkambi in which its allegedly been put off the tables as its been to expensive to give to (CF) Suffers in general.
This drug Orkambi has been known to help people with (CF) but has been taken of the table as its deemed to expensive by the Irish state. The mother of 3 has been sleeping outside the offices of the Irish government here on Kildare Street since last Saturday the 8th April in the hope of raising awareness on her daughter case as well as raising awareness on the other 568 cases nationwide.
Hazel explained to Prime Bling (PB) That the state has allegedly put it out there that the cost of this treatment was to expensive and in doing so they officially put it out there, that the people who have (CF) Are not worth the cost of the drug Orkambi as it would cost to much per person.
At least 5 other people have also joined Hazel outside the Dail Eireann and they are all sleeping outside with her.
There will be a public demonstration outside the Dail this Wednesday 12th April at 1.pm, to highlight these cases.
Cystic Fibrosis Ireland,will also be talking part in this event. This will be the 3rd time such an event has taken place outside the Dail on this matter.
Hazel also explained that her daughter has been in the past taken to hospital at least four times this year and only today she was admitted into hospital. Last year alone she spent 8 months in hospital. As well as the hospital stays her daughter has to take up to 50 different types of oral medications a day, plus take inhalers, and do a nebuliser 5 times daily.
Her daughter like all (CF) Sufferers is open to lung infections, chest infections, and is constantly on antibiotics.Her daughter cannot enjoy her life and do things other children enjoy. Hazel is very conscious that unless this treatment is made available sooner rather than later her daughter will not be able to go to college or do whatever she wants to do.
Hazel plans to stay outside the Dail till at least Wednesday where she is very hopeful that a positive result will come out of this. Hazel informed me that she left her home county of Longford here in Ireland, With a one way bus ticket a tent and on a wing of a prayer.
Hazel has expressed deep gratitude to the people who have not only welcomed her in Dublin City but who have actually stayed out with her outside the Dail here in Dublin City.
Minster of health Simon Harris did agree to address this problem several weeks ago saying allegedly that it would be fixed in a few weeks but sadly almost a month has since passed by and still not addressed. The Dail will resume again on Wednesday 12th April.
If you would like to get behind Hazel and the other 568 (CF) Sufferers you can pop down to the public peaceful demonstration this, Wednesday 12th April at 1.pm outside the Dail Eireann on Kildare Street Dublin City or you can pop down to them before hand.
Its not the 1st time that a parent has had to stand outside the Dail Eireann and only very recently Vera Twomey from Cork City here in Ireland actually walked from Cork to Dublin City to have a meeting with minster of health Simon Harris about legalizing cannabis oil for her sick daughter who has a rare form of epilepsy also known as Dravet Syndrome. Vera did the walk with Dublin Base TD Gino Kenny from the political party Solidarity. Gino is very active in helping to legalize the use of this oil as a medical treatment.
Image Credit: Prime Bling.