The Irish mother of a severely epileptic boy who has been living in Chicago with her son since 2007 wants to go back home but is unable to leave the U.S. for fear her son will die back in Northern Ireland due to the lack of basic medical services he requires. Charlotte Caldwell, 41, is the mother of Billy Caldwell, 3. They come from Omagh, Co. Tyrone. Billy has an extreme case of epilepsy; doctors call it Intractable Epilepsy. Caldwell brought her baby to Chicago in 2007 in an effort to save his life. It worked. A year and a half later, Billy is beginning to function like a healthy three-year old, and he's ready to go back home. Angry and upset that she is unable to return to Tyrone due to lack of medical services, Caldwell said she feels she is in "exile" from her family and friends. "We are in isolation here and we would just like to be given the chance to go home and treat Billy there," said Caldwell. In 2006 Caldwell and Billy's father Andy Kempston, 42, were told their baby only had six months to live, and that nothing could be done to save his life. When Billy was four months old, he awoke from his sleep and just began staring. He repeated this twice that first night at 30-minute intervals. Knowing something was not right, Caldwell brought Billy into the local general hospital, Tyrone County Hospital, in Omagh. The next day he was transferred by ambulance to the Erne Hospital in Enniskillen, Co. Ferman-agh. In the ambulance, Billy had a convulsion, which then lasted six hours, and was the first of many to come. Billy was transferred to the Royal Belfast Hospital for Sick Children (RBHSC) for further care under a specialist neurological pediatrician. Billy, who has an older brother Kyle back in Ireland, remained in the RBHSC for the next 14 weeks. Caldwell watched as her baby boy experienced a full range of seizures. Her heart was breaking and she didn't know what do to. Doctors tried various drugs but his seizures only got worse. He was having up to 30 seizures a day, lasting two to 12 minutes. The hospital even went as far as shutting down Billy's body in an effort to reprogram his brain and prevent further seizures. This didn't work either. More weeks had passed, and finally doctors said they could do no more for Billy. His death was inevitable; six months at best they gave him. They told his parents to take him home and make him comfortable. Refusing to believe that this could be the end of her baby's life, Billy's mother frantically began searching the Internet for answers. It was there she came across the Children's Memorial Hospital in Chicago and Dr. Douglas Nordli. Nordli is an epitologist who specializes in the care of children with seizures. Caldwell knew this was her only hope. After lots of tears, heartache and fundraising, Caldwell and Billy were on a plane to Chicago. After a year and half of treatment, Billy's major seizures have gone. He went from having 30 seizures a day to now having one or two a week. He is just learning to walk and can say, "mum." Caldwell is delighted with her son's progress, and said if it wasn't for Nordli and his team at the Children's Memorial Hospital Billy would be long dead. But, now said Caldwell, when the time has come to bring her son back home to Ireland, she can't. "The health minister in Northern Ireland has not put the services in place for me to take Billy home or for the other families. If we take our children home now they will regress and most likely die," said Caldwell, adding that two other Irish families have also come to Chicago for treatment for their children under Nordli's care through the Billy Caldwell Foundation. For Billy to continue with his treatment back home, he needs to have a pediatric neurologist/epitologist who is committed to treating kids with Intractable Epilepsy. Billy will also need someone trained in the Ketogenic diet, a diet that currently controls Billy's seizures. Intense physical, occupational and speech therapy will be required. Billy currently gets 20 intense therapy sessions a week in Chicago. Lobbying on her behalf back home in Ireland is chairperson of the Committee for Health, Social Services and Public Safety Iris Robinson, wife of First Minister of Northern Ireland Peter Robinson (who along with Deputy First Minister Martin McGuiness launched the Billy Caldwell Foundation in October 2008). "Iris, and two others called Anne Monaghan and John Burton, have been fantastic in lobbying the health minister of Northern Ireland. They are really fighting for our children's behalf. They are wonderful," said Caldwell, hoping in coming months that their work will pay off and that she and her son will be able to return to Ireland to live a normal life. In an effort to continue raising funds for Billy and other children with severe epilepsy, a local builder in Co. Tyrone donated a house that is currently being raffled off to help with the costs of sending Irish children to Chicago for the state of the art treatment. Tickets are $1,000 each. "Billy's therapy is costing over $2,000 a week. That is just therapy and not including the cost of medicines, paying rent or the cost of living," said Caldwell, adding that to date $200,000 has been raised for Billy's treatment and that has just about run out. Also looking towards the future, Caldwell said that her son could be a candidate for surgery, which would cost a huge amount, but it would mean Billy would be seizure free. In coming months, Robinson and McGuiness will host a fundraiser on behalf of the Billy Caldwell Foundation during a trip to Chicago. Online donations are accepted at www.billycaldwellfoundation.com. Information on the house raffle is also available. Charlotte Caldwell can be reached at 773-387-2317.
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