A Northern Ireland baby being treated in America for a rare form of epilepsy is making “amazing” progress, her parents have said.
One-year-old Katie Maguire suffers from intractable epilepsy, which causes violent seizures each day.
But the Magherafelt tot was given a second chance at life after Belfast Telegraph readers raised much-needed cash to fund the life-saving journey to the States.
Gerry McCann and Mekila Maguire were forced to give up work to care for their desperately ill daughter and because the medical expertise was unavailable in Northern Ireland the distraught couple had to go abroad.
Although she is a year old, fragile little Katie has the mental capacity of a new-born. The terrible nature of the condition means she could not see, eat or swallow and had to be fed through a tube. But this treatment means, miraculously, she is making a recovery.
Speaking from Katie’s hospital bedside in Chicago, her parents said: “It has been truly amazing. Eight weeks ago we travelled here full of hope and expectation for Katie’s future. Katie’s first procedure was to receive a 24-hour video EEG to determine the extent of her seizure activity. When this was completed we met with Professor Dr Nordli who explained that Katie had a significant problem under her frequent seizures.
The surgery took a gruelling two and a half hours
“Firstly, he needed to do more studies on Katie’s feeding. Over the following two days of investigation and biopsy, Katie required to be heavily sedated. At the conclusion, it was shown that Katie’s stomach did not lie in the normal vertical position but horizontally beneath Katie’s ribs. Her airways and voice box were extensively damaged due to her severe reflux of the acid in her stomach. This regurgitated acid had been burning her throat and gullet, explaining why Katie lost the ability to shout and make normal baby noises.”
Then, on September 1, Katie celebrated her birthday, a milestone they had feared she wouldn’t see: “A few days after that we had Katie’s tests, and we were referred to a top paediatric surgeon, Dr Cathy Bareness.
“She sat down with us and explained everything about the operation and how, to begin with, she was going to reconstruct Katie’s stomach and how she would then fit a tube to feed Katie comfortably.
“The surgery itself took a gruelling two and a half hours,” generating extra unexpected bills that may cost up to $100,000.
“Twenty-four hours after the operation, Katie was feeding comfortably. Her seizures have reduced by 50%. As a consequence her medications have been cut.”
“At last, we now have a baby girl who can now smile again and who responds to our voices. Katie has reached a milestone which we were afraid we would never see and we have every faith that our daughter will see so many more.”