Intensive fundraising for US op to allow Trim girl (3) speak

Fundraising efforts are underway to send three-year-old Molly Lanney from Trim to the United States for a life-changing operation that will allow her to speak. Molly, who will be four next month, is a daughter of Michael and Anita Lanney and suffers from DiGeorge Syndrome which is also known as 22Q11 deletion. While the syndrome, which affects one in 2,000 children, is the second most common syndrome after Down's Syndrome, not a lot is known about it here. Many children with the sydrome have heart complaints but, in Molly's case, she is missing glands to protect her immune system which means she gets sick a lot, but the main impact is on her speech. Because of the way her head is shaped, there is a gap at the back of her neck and the operation she is to undergo on 22nd June will see that flap built up and, together with intensive speech and language therapy, Molly will then be able to speak. Her mother, Anita, explained that she can say some words but while they can understand what she is trying to say, most people cannot understand her. She also uses sign language to communicate. Molly was diagnosed with DiGeorge Syndrome when she was just a few weeks old. She couldn't keep her food down and was taken to the special care unit in Our Lady of Lourdes Hospital, Drogheda, where medics noticed characteristics about her features and referred her to Crumlin Children's Hospital where genetic tests were carried out and she was diagnosed with DiGeorge Syndrome. Ms Lanney said that a lot of children are never diagnosed and struggle on without getting treatment. They say they were lucky that Molly was diagnosed so young. The operation that Molly will undergo in June is not available here and while there is an operation that can be undertaken in Ireland when she is six, Ms Lanney said there are no guarantees. The operation at the Upstate Medical Centre in Syracuse, New York State, will be performed by Dr Robert Shprintzen who first diagnosed the condition in the 1970s. Ms Lanney said there is a 95 per cent chance that Molly will speak perfectly after having intensive speech and language therapy. The operation itself will cost $34,000 which includes a three-day stay in hospital but the Lanneys expect to be in Syracuse for three-and-a-half weeks, depending on Molly's recovery. Ms Lanney explained that while the health system is one of the best in the world in the States, it is also one of the most expensive. A number of fundraisers are being organised to help raise money for the appeal, including a Night at the Dogs in Shelbourne Park on 19th June and a golf classic and auction in Knightsbrook Hotel, Trim, on 9th July. The golf classic includes the golf, dinner and entertainment and it is €260 to enter a team of four. There will also be an auction of sports memorabilia that night which is being organised by Molly's aunt's partner, Ian Ross, who is director of communications with Everton FC. It includes jerseys signed by Fernando Torres, Stephen Gerrard, Wayne Rooney and the England team. A unique item is an Everton shirt signed by Wayne Rooney for the late Stephen Gately of Boyzone. Theatre producer Bill Kenright is chairman of Everton FC and, in 2003, Stephen Gately played Joseph in the musical Joseph and his Amazing Technicolour Dreamcoat. When the show was staged in Liverpool, Gately was presented with an Everton jersey signed by Wayne Rooney who played with the club at the time. Gately forgot the shirt and Mr Ross has donated it to the auction. To book a team in the golf classic, contact Michael Lanney on (086) 404 2660, Gavin Hunt on (046) 948 2100 or email ghunt@knightsbrook.com There will be a stall at Dunderry Fair Day on Sunday 9th May where they will also be raising money and a race night will take place in the Willow Oaks Pub, Trim, on 28th May. Local schools are particpating in an non-uniform day on 28th May and a group of 30 women are taking part in the ladies' mini-marathon on 7th June to help raise funds. Ms Lanney works in Carrig Donn in Liffey Valley and the outlet is doing a four-week promotion where all money from sales of specific shopping bags, photo frames and teapots, will go towards the appeal. While the Lanneys are delighted that Molly can have the operation, her mother said they are feeling more nervous as the operation approaches. "The nerves are starting to kick in now. At the start, we thought it was brilliant to find out this can be done. We thought Molly would be left like this and there wasn't much hope but then we met Dr Shprintzen at a conference and we had a lot more hope. We are flying halfway across the world to people we have never met and a place we have never been for this operation but we are confident because they know so much about the syndrome in the Upstate Medical Centre. They really put us at ease when we were in contact with them and we are confident we are doing the right thing," added Molly's mum. For more information or to make a donation see www.littlemolly.info