Aoife’s appeal for life-saving surgery

first_imgShannon Airport braced for a devastating blow TAGSClareCommunityEDSEhlers Danlos SyndromefundraisehealthSixmilebridgesupport Housing 37 Compulsory Purchase Orders issued as council takes action on derelict sites Previous articlePatients in Limerick encouraged to take part in national surveyNext articleUS Meeting Planners get a taste of the Shannon Region as Limerick is promoted as a destination city Bernie Englishhttp://www.limerickpost.ieBernie English has been working as a journalist in national and local media for more than thirty years. She worked as a staff journalist with the Irish Press and Evening Press before moving to Clare. She has worked as a freelance for all of the national newspaper titles and a staff journalist in Limerick, helping to launch the Limerick edition of The Evening Echo. Bernie was involved in the launch of The Clare People where she was responsible for business and industry news. Aoife’s condition is such that she can’t travel in a car without special support.SUE Sage’s heart breaks when her 14-year old daughter, Aoife says “I’m not living mam. I’m existing”.The bright young teenager is practically bed-bound and housebound because she is living in danger of dislocating her neck, which could paralyse or even kill her.Sign up for the weekly Limerick Post newsletter Sign Up Aoife suffers from the debilitating genetic condition Ehlers-Danlos Syndrome (EDS) which leaves her joints liable to dislocation and she suffers constant pain.To take her out of immediate life-threatening danger, Aoife, from Sixmilebridge, needs surgery which can only be performed in Barcelona at a cost of €100,000.“Aoife missed so much primary school and while she went to secondary school for a few weeks, she couldn’t continue. She is socially isolated, she has no friends she’s in pain all the time and she is all but housebound.“If she can get out of bed and come downstairs for an hour a day, that is a good day,” Sue told the Limerick Post.Aoife’s three siblings, Aine (21) Eoin (16) and Aodhán (10) all suffer from the condition, but Aoife is the only one so seriously impacted.“She suffers so much and yet she is the most undemanding child. We had no option but to go to the UK first because there are no specialists in EDS here in Ireland. The only place she can have this surgery is in Barcelona”.The family have to raise the money as the specialist surgery can only be performed in the private clinic in Barcelona, ruling out the Treatment Abroad fund and the Cross “Border Treatment fund which requires that patients pay up front and, even then, only some of the cost may be refunded.Mum Sue and dad Declan have to rely on family friends and community to help them take Aoife to the UK and now to get her to Spain for this vital surgery.“This is our child’s life. She has no quality of life and, apart from taking her out of immediate danger, it won’t cure the EDS. The best we can hope for is that she can get some relief,” said Sue.There is a fundraiser for Aoife this Saturday, June 8, when DJ James Sexton will take revellers back to the ’80′s, with music, finger food and spot prizes in the Oakwood Hotel in Shannon 8.30pm, tickets €20.Anyone who would like to help Aoife can log on to NewsCommunityHealthAoife’s appeal for life-saving surgeryBy Bernie English – May 31, 2018 1473 Patrickswell women get to the heart of the matter Linkedin Twitter Printcenter_img Population of Mid West region increased by more than 3,000 in past year Email RELATED ARTICLESMORE FROM AUTHOR Facebook WhatsApp Is Aer Lingus taking flight from Shannon? Unstoppable Sean shows that all things are possible Advertisementlast_img read more

‘Submit quake response equipment inventory’

first_imgHe urged LGUs to invest in disasterresponse equipment. They can also request from their respective ProvincialDisaster Risk Reduction and Management Office (PDRRO) their need for the fund,he said. This accounting will help identifylocalities that lack earthquake response equipment, he added. “During the briefing, you are directedto orient your clients on what to do before, during and after an earthquake;evacuation route and plan; the designated evacuation area (should be an openspace); and emergency hotline numbers,” it said. (PNA) The OCD director said the accountingwill also identify equipment and trained personnel in the region that canpossibly be deployed in Davao del Sur. OCD regional director and RegionalDisaster Risk Reduction and Management Council chair Jose Roberto Nuñez saidthe inventory meant to “establish (earthquake) preparedness measures andarrange response priorities ahead of time in our region…” “Sometimes, we have volunteers thatare still not equipped or trained in what they do. (We want to give themtraining) so they can hasten their action in the areas where they will bedeployed,” said Nuñez. ILOILO City – In the wake of therecent earthquake that rocked Davao del Sur, the Office of Civil Defense (OCD)in Western Visayas ordered local government units (LGUs) to submit anaccounting of their response equipment and volunteers. The accounting of volunteers,meanwhile, aims to identify the volunteers who are yet to receive capabilitytraining from the OCD 6. All cities and provinces in Region 6are expected to submit their report at 5 p.m. today.center_img “Davao del Sur lack equipment. Weinitiated in the region, at least we have certain search and rescue equipmentand one personnel that can be sent to the affected region,” he said. In an advisory released on Monday, theOCD said hotel owners, operators, and other stakeholders are encouraged toidentify or assign safety officers that will conduct safety briefings beforethe start of gatherings this holiday season. A 6.9-magnitude earthquake struckDavao del Sur over the weekend. Meanwhile, hotels in the region arealso advised by OCD to conduct their safety briefing for possible earthquakeduring scheduled events or gathering. PHOTO BY IAN PAUL CORDERO/PN “We want to identify the needs and putthem on a checklist. At least we will know the areas which lack certainequipment that other areas can augment,” Nuñez said. The office released a memorandum onthis directed to the chairpersons of the disaster risk reduction and managementcouncil in the provinces, cities and municipalities.last_img read more