Saturday, January 12, 2008

US saves toddler's life which was stricken with seizures

The mother of a seriously-ill Ulster toddler who flew to the US for life-saving treatment has paid tribute to the thousands of people in Northern Ireland who gave generously to help them.

Charlotte Caldwell told the Belfast Telegraph that words could not express her gratitude to those who dug deep to help send her son Billy to receive specialist treatment at the Children's Memorial Hospital in Chicago.

Two-year-old Billy was diagnosed with a severe form of epilepsy when he was just four months old. He spent much of his young life at the Royal Victoria Hospital receiving treatment.

However, after a few months doctors sent him home to die. They initially gave Billy six months to live.

Not satisfied with their diagnosis, the mother-of-two set about trying to find answers and came across a children's epilepsy expert in the US.

A special fund was set up, which raised £175,000, to fund Billy's trip and pay for all his medical costs.

The pair then spent more than three months in Chicago where doctors conducted numerous tests on the Omagh toddler to see if he was a candidate for life-saving surgery.

Before arriving in the US, Billy suffered up to 30 seizures a day. It would only take one extreme seizure to kill him.

Charlotte had hoped the tests would confirm that Billy was a candidate for an operation which would end his seizures. But last month the family was told that he was not.

Instead they were able to tell the family that Billy suffered from a rare neuro-genetic disorder call Angelman Syndrome. His epilepsy is only an underlying symptom of the disorder and doctors have prescribed a treatment more suited to the child's needs.

This, of course, means vindication for Charlotte.

Last year, before the pair set off for Chicago, the Health Minister Michael McGimpsey tried to convince her to go to Great Ormond Street to seek help even though, Charlotte claimed, doctors had originally told her there was no treatment in the UK or Ireland.

"I just feel I was justified," Charlotte explained. "While it's not the best diagnosis in terms of that it means - he will have speech problems, developmental delays, that his seizures won't subside until his is about eight or nine or that he will ever lead an independent life - we are just relieved that we have a diagnosis.

"For the first time in two and a half years he is on the correct treatment. Before, Billy was on four drugs, three of which he did not need to be on."

Besides reduced medication and a new diet, Billy will also have to undergo intense speech, occupational and physio therapies for the rest of his life.

Charlotte hopes to use the money raised to fund private therapists as well as pay for regular trips to the US for treatment.

She has also made a New Year's resolution - to get Billy walking. She said: " He is going to have to have intense physiotherapy to do it, but now that we are able to give him the right treatment, it's possible.

"I just want to thank everyone who donated to Billy's fund.

"I am convinced if we had not had that money Billy would not be here today."


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