Lighting the way for Orkambi campaign
CANDLELIT VIGIL TO RAISE AWARNESS FOR CYSTIC FIBROSIS DRUG
THERE was a great turnout at a recent candlelit vigil in Enniscorthy in support of Cystic Fibrosis patients and their fight for lifesaving drugs like Orkambi.
The vigil which took place close to the children’s playground on the Prom was attended by parents of children with Cystic Fibrosis and members of the public who want to see the drug made available in Ireland.
The vigil was one of several organised around the country in a bid to get the drug approved.
Julie Forster whose daughter Ruth suffers from Cystic Fibrosis (CF) was one of three mothers who organised the vigil in Enniscorthy. The other two organiser Suzanne Doyle and Shauna McCormack also have children who suffer from CF.
Ireland is the country with the highest per-capita rate of cystic fibrosis, a fatal, genetic disease that causes severe problems with the lungs and digestive system.
It affects around 70,000 people worldwide and around 1,200 in Ireland. About 50 new cases of cystic fibrosis are diagnosed in Ireland each year.
The vigil began with an opening address from Shauna McCormack who spoke about CF in general and what Orkambi could mean for children suffering from it.
Fr Odhran Furlong also blessed the candles used in the vigil and prayed for all sufferers of CF. There was also a minute’s silence for those who have lost their battle with CF.
Julie and her daughter Shau- na Hever sang Hallelujah while Suzanne read a poem entitled The Warrior. Julie then recited the poem What CF can’t have and the vigil concluded with a song by Shauna Hever, I’m In Here, which is used as the official song of the YesOrkambi campaign.
Julie and Suzanne then each read a poem followed by songs from Julie and another of her children, Shauna Hever.
Julie said that all three of their children are deemed suita- ble candidates for Orkambi. She said the whole delay in making a decision on the introduction of the drug is very frustrating.
‘We haven’t heard anything from the Government about the possible introduction of Orkambi even though we were told there would be a decision before the end of February.
‘Last Tuesday Cystic Fibrosis Ireland published new information show that it is even more cost effective than initially thought to introduce Orkambi in Ireland.
‘If there is no decision from the Government on this in the coming days we will be holding a protest march outside of Leinster House on March 1.
‘In Wexford alone I’m in contact with families of 9 children who are eligible for Orkambi, there’s very likely more. We had hoped to have a decision mid Feb but as of yet nothing has been forthcoming, it’s still with the HSE.’
The vigil in Enniscorthy was one of several held around the country including Riverchapel in Gorey and outside Minister Simom Harris’ office in Bray and at Leinster House.
The 22nd Wexford Oulart Scout group also took part during a hike on Friday evening as part of the campaign.
Julie thanked Slaney Search & Rescue who provided safety cover and Crosby’s Funeral Home which gave them the use of their P.A. system.