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

Muhammad Ali planned details of funeral himself, spokesman says

first_imgMuhammad Ali began crafting details of his own funeral years ago, insisting on an open and inclusive service, a family spokesman said Tuesday.”This began with ‘The Champ’ a decade ago,” spokesman Bob Gunnell told reporters at a news conference. “As he convened the meeting, he said, ‘This is what I would like to see, this is the type of program that I would like to see, that is inclusive of everyone, where we give as many people an opportunity that want to pay their respects to me.’ “Ali also said it was important that the memorials be conducted in the Muslim tradition, Gunnell said.The three-time heavyweight champion died Friday night at age 74 after a lengthy battle with Parkinson’s disease.The planning for the memorials involved many people in the Louisville, Kentucky, area who were asked to sign nondisclosure agreements, Gunnell said.The plans will begin to play out Wednesday in a series of events expected to draw thousands of friends and fans of the late boxer to his hometown of Louisville as well as reporters and dignitaries from around the world. While organizers say they will not release a full list of dignitaries attending Friday’s memorial service — the cornerstone event — they have said that former President Bill Clinton, actor and comedian Billy Crystal and journalist Bryant Gumbel are among those scheduled to give eulogies.Actor Will Smith, who played the title role in the 2001 film “Ali,” and former heavyweight champion Lennox Lewis will be among eight pallbearers, according to organizers.Here’s a schedule of the planned events:Wednesday: ‘I Am Ali’ festivalThe city-sponsored festival Wednesday will “celebrate Ali’s life journey and fierce determination,” according to the city of Louisville. In addition to arts, entertainment and education offerings, “there will also be a wall where children can write what they want to be the greatest in.” Thursday: Islamic funeral prayer programA brief program of prayer, called a jenazah, will be held Thursday at the north wing of the Kentucky Fair and Exposition Center, with an overflow crowd allowed in Freedom Hall, where Ali’s last fight in Louisville was held in 1961. Imam Zaid Shakir, a Muslim scholar and co-founder of Zaytuna College in Berkeley, California, will lead the service.”To be properly prepared for burial, prayed over and then buried is a right owed to every single Muslim,” Shakir said in a statement provided by organizers. “If no one fulfills those rights, then the entire community has fallen into sin. In the case of someone of Muhammad Ali’s stature, to leave any of those rights unfulfilled would be a crime.”Friday: Funeral procession and private burialAli’s funeral procession will travel along the street named for him, Muhammad Ali Boulevard, and past his boyhood home before heading to Cave Hill Cemetery, where he will be buried. City officials are encouraging residents to line the streets to greet the procession as it passes. Memorial serviceThis service will be the main public celebration of Ali’s life, to be held Friday afternoon at the 22,000-seat KFC Yum! Center in Louisville. The event will feature readings from the Quran, remarks from leaders from other faiths, eulogies from Crystal, Gumbel and Clinton and a poetry reading by Attallah Shabazz, Malcolm X’s eldest daughter.Valerie Jarrett, a senior adviser to President Barack Obama, also will read a statement from the President. Obama cannot attend, because the service conflicts with his daughter Malia’s high school graduation, Gunnell said.Ali’s widow, Lonnie, has spoken with Obama on the phone, and she “has appreciated his kind words and condolences,” Gunnell said.The city is largely giving itself over to the memorial service, offering free bus rides to ticketholders, urging downtown businesses to use common sense when deciding whether to open and imploring residents to offer a heaping slice of Southern hospitality to the throngs of out-of-towners. The police department is calling on some off-duty personnel to help, and the Louisville Convention and Visitors Bureau has lined up about 1,000 volunteers, its director said.last_img read more