The mother of a seriously ill toddler says she is being forced to live in “exile” by health chiefs after moving to America to get life saving medical treatment for her son.
For two years Omagh woman Charlotte Caldwell has spent tens of thousands of pounds to ensuring her three-year-old son Billy receives care at Children’s memorial Hospital in Chicago.
The mother says that due to a lack of medical services here, her son will die if she brings him back to Northern Ireland.
Billy suffers from Angelman Syndrome which causes several serious conditions including intractable epilepsy, hypotonia, microcephaly and development delay.
Despite being sent home by doctors to die two years ago, he has bravely battled his illness and continues to make steady progress.
Billy is one of six children from Northern Ireland forced to travel with their parents to Chicago to receive essential treatment after health chiefs have failed to provide adequate care facilities at home.
And each of the families has been forced to cover the cost of medical bills themselves due to a lack of finance from health bosses here.
Last night Charlotte spoke of her heartbreak at being separated from family and friends. She said: “All the families, including myself have been forced to raise our own funds so our children can be properly treated in America. Because we are in America we are isolated from our families and friends, we are being forced to live in exile.
“I want to bring Billy home but I have been told that he continues to require the intensity of treatment he is currently getting in Chicago otherwise he will begin to regress and will eventually die.
“It’s not just about Billy or the other children in Chicago, it’s about all the children who don’t even get a chance to leave this country for treatment. My fear is that if we run out of money and I have to bring Billy home he will die.”
Billy’s doctor in Chicago, Dougla R Nordli, described the toddler as a “medically complex child whose daily care is demanding and requires a high level of consistency”.
He added: “Children with intractable seizures and complex medical needs such as Billy’s are best addressed through a multi-disciplinary team approach that provides comprehensive care.
“It is imperative that Billy continues care with a paediatric neurologist, hopefully with expertise or knowledge of children with intractable epilepsy. It is crucial that the paediatrician and neurologist are able to co-ordinate closely that the necessary treatment and therapies are administered.”
A spokesman for the Department of Health said: “Specialist hospital services for children who suffer from intractable epilepsy are provided at the Royal Belfast Hospital for Sick Children. Children from Northern Ireland also have the opportunity of referral to Great Ormond Street Hospital.”
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